ACN - 101321555 Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

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Ethical Considerations for Disseminating Research Findings on Gender-Based Violence, Armed Conflict, and Mental Health: A Case Study from Rural Uganda (Papers: Jennifer J. Mootz, et al | June 2019)

Published/Released on July 12, 2019 | Posted by Admin on July 8, 2019 | Keywords: , , , , , , ,

Abstract Gender-based violence (GBV) is a major public health problem that is exacerbated in armed conflict settings. While specialized guidelines exist for conducting research with GBV, guidance on disseminating findings from GBV research is scant. This paper describes ethical considerations of designing and disseminating research findings... More

Abstract Gender-based violence (GBV) is a major public health problem that is exacerbated in armed conflict settings. While specialized guidelines exist for conducting research with GBV, guidance on disseminating findings from GBV research is scant. This paper describes ethical considerations of designing and disseminating research findings on GBV, armed conflict, and mental health (including alcohol misuse) in conflict-affected settings in Northeastern Uganda. Following completion of two research studies, we conducted a half-day dissemination meeting with local community professionals (n=21) aged 24 to 60. Attendees were divided into small groups and given a quiz-style questionnaire on research findings to prompt discussion. Two primary ethical tensions arose. One ethical consideration was how to disseminate research findings equitably at the participant level after having taken care to collect data using safe and unharmful methods. Another ethical issue concerned how to transparently share findings of widespread problems in a hopeful and contextualized way in order to facilitate community response. We recommend planning for dissemination a priori, engaging with partners at local levels, and grounding dissemination for action in evidence-based practices.

Mootz, J. J., Taylor, L., Milton L. Khoshnood, W. & Khoshnood, K. (2019) Ethical Considerations for Disseminating Research Findings on Gender-Based Violence, Armed Conflict, and Mental Health: A Case Study from Rural Uganda. Health and Human Rights Journal. Publisher (Open Access): https://www.hhrjournal.org/2019/06/ethical-considerations-for-disseminating-research-findings-on-gender-based-violence-armed-conflict-and-mental-health-a-case-study-from-rural-uganda/

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Forced Migration Review – Issue 61 (Papers: Marion Couldrey and Jenny Peebles Editors | June 2019)

the ETHICS issue exploring ethical questions that confront us in our work

We each live according to our own personal code of ethics but what moral principles guide our work? The 19... More

the ETHICS issue exploring ethical questions that confront us in our work

We each live according to our own personal code of ethics but what moral principles guide our work? The 19 feature theme articles in this issue debate many of the ethical questions that confront us in programming, research, safeguarding and volunteering, and in our use of data, new technologies, messaging and images. Prepare to be enlightened, unsettled and challenged. This issue is being published in tribute to Barbara Harrell-Bond, founder of the Refugee Studies Centre and FMR, who died in July 2018. Forced Migration Review issue 61 www.fmreview.org/ethics PDF copy of this edition Contents
  • 4 Big data, little ethics: confidentiality and consent Nicole Behnam and Kristy Crabtree
  • 7 New technologies in migration: human rights impacts Petra Molnar
  • 9 Social media screening: Norway’s asylum system Jan-Paul Brekke and Anne Balke Staver
  • 12 Developing ethical guidelines for research Christina Clark-Kazak
  • 15 ‘Over-researched’ and ‘under-researched’ refugees Naohiko Omata
  • 18 Research fatigue among Rwandan refugees in Uganda Cleophas Karooma
  • 20 Over-researching migration ‘hotspots’? Ethical issues from the Carteret Islands Johannes M Lutz
  • 23 Ethics and accountability in researching sexual violence against men and boys Sarah Chynoweth and Sarah Martin
  • 26 Ethics and consent in settlement service delivery Carla Nayton and Sally Baker
  • 28 Ethical primary research by humanitarian actors Prisca Benelli and Tamara Low
  • 30 EU migration strategy: compromising principled humanitarian action Anaïs Faure Atger
  • 33 A humanitarian approach to travel medicine? Marta Aleksandra Balinska
  • 36 Principled humanitarian assistance and non-State armed groups Ruta Nimkar, Viren Falcao, Matthew Tebbutt and Emily Savage
  • 39 Ethical dilemmas posed by unethical behaviour by persons of concern Anna Turus
  • 41 Ethical quandaries in volunteering Ashley Witcher
  • 44 The ethical use of images and messaging Dualta Roughneen
  • 47 Representing refugees in advocacy campaigns Natalie Slade
  • 49 Putting safeguarding commitments into practice Agnes Olusese and Catherine Hingley
  • 52 Safeguarding in conflict and crisis Sarah Blakemore and Rosa Freedman Tribute to Barbara Harrell-Bond
  • 55 A Life Not Ordinary: our colleague Barbara Harrell-Bond Matthew Gibney, Dawn Chatty and Roger Zetter
  • 56 A lifelong commitment to justice HRH Prince El Hassan bin Talal of Jordan
  • 58 A refugee-centred perspective Anita H Fábos
  • 60 Building expert witness reports: Barbara’s legacy Maja Grundler
  • 62 The helpfulness of Imposing Aid: a tribute from the Refugee Law Project Chris Dolan
  • 65 Barbara’s ethics of antagonism Joshua Craze
  • 67 AMERA: delivering a refugee-centred approach to protection Sarah Elliott and Megan Denise Smith
  • 69 From a critique of camps to better forms of aid Alyoscia D’Onofrio
  • 72 Resist injustice Olivier Rukundo
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Thinking about ethics in Burma research (Papers: Lisa Brooten & Rosalie Metro | 2014)

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The ethics of New Development Economics: is the Experimental Approach to Development Economics morally wrong? (Papers: Stéphane J. Baele)

Published/Released on November 19, 2013 | Posted by Admin on May 21, 2019 | Keywords: , , , , , , , , ,

Abstract: The 2000s have witnessed the arrival and growing popularity of randomized controlled experiments (RCTs) in Development Economics. Whilst this new way of conducting research on development has unfolded important insights, the ethical challenge it provokes has not yet been... More

Abstract: The 2000s have witnessed the arrival and growing popularity of randomized controlled experiments (RCTs) in Development Economics. Whilst this new way of conducting research on development has unfolded important insights, the ethical challenge it provokes has not yet been systematically examined. The present article aims at filling this gap by providing the first ad hoc discussion of the moral issues that accompany the use of RCTs in Development Economics. Claiming that this new research agenda needs its own, specific set of ethical guidelines, we expose the six ethical problems that these experiments potentially provoke and that should therefore be carefully assessed by ethics committees before an RCT is launched and by scholarly journals before its results are published. Keywords: Development Economics, ethics, RCTs, experiments

Baele, Stéphane J. (2013) ‘The ethics of New Development Economics: is the Experimental Approach to Development Economics morally wrong?’, The Journal of Philosophical Economics, VII:1 Publisher (Open Access): https://jpe.ro/?id=revista&p=291&cuprins=vizibil

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Australian Mental Health Consumer and Carer Perspectives on Ethics in Adult Mental Health Research (Papers: Alyssa R. Morse, et al | April 2019)

Abstract Barriers to research arise when national ethical guidelines governing the inclusion of consumers in mental health research are implemented at the local level. Equivalent guidelines for research involving carers are not available. A social science investigation of Australian mental health consumer and carer perspectives... More

Abstract Barriers to research arise when national ethical guidelines governing the inclusion of consumers in mental health research are implemented at the local level. Equivalent guidelines for research involving carers are not available. A social science investigation of Australian mental health consumer and carer perspectives on research ethics procedures was conducted in two interlinked stages: (a) a discussion forum with consumers, carers, and lived-experience researchers and (b) in-depth interviews with consumers and carers. Data collection and analysis drew strongly on methodological features of grounded theory. Privacy, confidentiality, and stigmatizing ethics procedures were key issues for consumer and carer participants. Recommendations for research practice include the following: considering the impact of information sharing on participants' relationships and adopting individual-focused approaches to managing research risks.
Keywords: caregiver; carer involvement; consumer involvement; mental health; research ethics; service user

Morse, A. R., Forbes, O., Jones, B. A., Gulliver, A., & Banfield, M. (2019). Australian Mental Health Consumer and Carer Perspectives on Ethics in Adult Mental Health Research. Journal of Empirical Research on Human Research Ethics. https://doi.org/10.1177/1556264619844396 Publisher: https://journals.sagepub.com/doi/abs/10.1177/1556264619844396

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Genomic Research Through an Indigenous Lens: Understanding the Expectations (Nanibaa’ A. Garrison, et al | August 2019)

Published/Released on August 15, 2019 | Posted by Admin on April 2, 2019 | Keywords: , , , , , , ,

Abstract Indigenous scholars are leading initiatives to improve access to genetic and genomic research and health care based on their unique cultural contexts and within sovereign-based governance models created and accepted by their peoples. In the past, Indigenous peoples’ engagement with genomic research was hampered by... More

Abstract Indigenous scholars are leading initiatives to improve access to genetic and genomic research and health care based on their unique cultural contexts and within sovereign-based governance models created and accepted by their peoples. In the past, Indigenous peoples’ engagement with genomic research was hampered by a lack of standardized guidelines and institutional partnerships, resulting in group harms. This article provides a comparative analysis of research guidelines from Canada, New Zealand, Australia, and the United States that pertain to Indigenous peoples. The goals of the analysis are to identify areas that need attention, support Indigenous-led governance, and promote the development of a model research policy framework for genomic research and health care that has international relevance for Indigenous peoples. Expected final online publication date for the Annual Review of Genomics and Human Genetics Volume 22 is August 30, 2019. Please see http://www.annualreviews.org/page/journal/pubdates for revised estimates.

Garrison, N. A., Hudson, M., L. Ballantyne, LL., Garba, I. Martinez, A., Taualii, M., Arbour L., Caron, NR. and Rainie, SC. (2019). Genomic Research Through an Indigenous Lens: Understanding the Expectations. Annual Review of Genomics and Human Genetics 20(1) https://www.annualreviews.org/doi/abs/10.1146/annurev-genom-083118-015434

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The Foundation of Knowledge Production: Research Ethics Education in Taiwan (PowerPoint: Chien Chou | September 2018)

Outline

1. The Importance of Research Ethics 2. Researchers’Needs for Education 3. Education and Implementation Mechanism of Research Ethics in Taiwan’s Higher Education 4. Concluding Remarks

The Importance of research ethics

• Presents a baseline for all research behaviors • Protects others, minimizes harm... More

Outline

1. The Importance of Research Ethics 2. Researchers’Needs for Education 3. Education and Implementation Mechanism of Research Ethics in Taiwan’s Higher Education 4. Concluding Remarks

The Importance of research ethics

• Presents a baseline for all research behaviors • Protects others, minimizes harm and increases the sum of good • Supports trust among researchers and between research communities and the public • Ensures research integrity and quality • Satisfies organizational and professional demands • Copes with new and more challenging problems

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Presenting and representing others: towards an ethics of engagement (Papers: Lucy Pickering and Helen Kara | February 2017)

Published/Released on February 16, 2017 | Posted by Admin on March 14, 2019 | Keywords: , , , , , ,

Abstract The ethics of research representation are rarely discussed. Yet representation can have a significant impact on research participants and audiences. This paper draws on some of the limited body of accounts of ethical challenges experienced in representing others in qualitative research. These accounts make clear... More

Abstract The ethics of research representation are rarely discussed. Yet representation can have a significant impact on research participants and audiences. This paper draws on some of the limited body of accounts of ethical challenges experienced in representing others in qualitative research. These accounts make clear that researchers often have to choose between ‘competing goods’ when representing others, such as participant control over what is presented and how, researchers’ ‘interpretive authority’, and whether and how to represent participants’ speech. These decisions frequently involve researchers choosing between ‘literal’ (empirical, evidence-based) and ‘real’ (authentic, experiential) truths. To resolve these dilemmas, some researchers are turning to creative methods of representation, such as poems, songs, plays and dance. Like all forms of representation, these methods require compromise: in particular, some detail, depth, or location may be sacrificed in return for accessible engagement with participants and wider audiences. Conversely, traditional methods of presentation may sacrifice some scope for engagement and accessibility in return for greater detail and depth. We argue that such sacrifices are a necessary component of all forms of qualitative representation and consequently require a reflexive approach to choices about representation. It is this reflexive approach which we argue constitutes an ethics of engagement. Keywords Ethics, presentation, representation, reflexivity, engagement

Pickering, L., and Kara, H. (2017) Presenting and representing others: towards an ethics of engagement. International Journal of Social Research Methodology, (doi:10.1080/13645579.2017.1287875) https://core.ac.uk/download/pdf/77601396.pdf

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Whitepaper: Practical challenges for researchers in data sharing (David Stuart, et al | September 2018)

Published/Released on March 21, 2018 | Posted by Admin on March 4, 2019 | Keywords: , , , ,

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The Ethics Ecosystem: Personal Ethics, Network Governance and Regulating Actors Governing the Use of Social Media Research Data (Papers: Gabrielle Samuel, et al | February 2019)

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Children in Social Research: Do Higher Payments Encourage Participation in Riskier Studies? (Stephanie Taplin, et al | February 2019)

Published/Released on February 09, 2019 | Posted by Admin on February 18, 2019 | Keywords: , , , , , , , ,

Abstract [colored_box]The MESSI (Managing Ethical Studies on Sensitive Issues) study used hypothetical scenarios, presented via a brief online survey, to explore whether payment amounts influenced Australian children and young people to participate in social research of different sensitivity. They were more likely to participate in the... More

Abstract [colored_box]The MESSI (Managing Ethical Studies on Sensitive Issues) study used hypothetical scenarios, presented via a brief online survey, to explore whether payment amounts influenced Australian children and young people to participate in social research of different sensitivity. They were more likely to participate in the lower sensitivity study than in the higher at all payment levels (A$200 prize draw, no payment, $30, or $100). Offering payments to children and young people increased the likelihood that they would agree to participate in the studies and, in general, the higher the payments, the higher the likelihood of their participating. No evidence of undue influence was detected: payments can be used to increase the participation of children and young people in research without concerns of undue influence on their behavior in the face of relatively risky research. When considering the level of payment, however, the overriding consideration should be the level of risk to the children and young people. . Keywords children and adolescent, pediatrics, justice, participant selection, inclusion, recruitment, payment for research participation, research ethics, risks, benefits, and burdens of research, beneficence and nonmaleficence, vignette studies, decision-making capacity, surrogate decision makers, parental consent, child assent, voluntariness, coercion .

Taplin, S., Chalmers, J., Hoban, B., McArthur, M., Moore, T. and Graham, A. (2019) Research Ethics Committees’ Oversight of Biomedical Research in South Africa: A Thematic Analysis of Ethical Issues Raised During Ethics Review of Non-Expedited Protocols. Journal of Empirical Research on Human Research Ethics. Publisher:

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Political Research and Human Research Ethics Committees (Papers: Anthony J. Langlois | 2011)

Published/Released on February 16, 2011 | Posted by Admin on February 5, 2019 | Keywords: , , , , , , ,

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The picture talk project: Aboriginal community input on consent for research (Papers: Emily FM Fitzpatrick, et al | 2019)

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Ethics & Human Research (E&HR)

Published/Released on January 24, 2019 | Posted by Admin on January 25, 2019 | Keywords: , ,

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Including People with Dementia in Research: An Analysis of Australian Ethical and Legal Rules and Recommendations for Reform (Papers: Nola M. Ries, et al | 2017)

Abstract Research is crucial to advancing knowledge about dementia, yet the burden of the disease currently outpaces research activity. Research often excludes people with dementia and other cognitive impairments because researchers and ethics committees are concerned about issues related to capacity, consent, and substitute decision-making. In... More

Abstract Research is crucial to advancing knowledge about dementia, yet the burden of the disease currently outpaces research activity. Research often excludes people with dementia and other cognitive impairments because researchers and ethics committees are concerned about issues related to capacity, consent, and substitute decision-making. In Australia, participation in research by people with cognitive impairment is governed by a national ethics statement and a patchwork of state and territorial laws that have widely varying rules. We contend that this legislative variation precludes a consistent approach to research governance and participation and hinders research that seeks to include people with impaired capacity. In this paper, we present key ethical principles, provide a comprehensive review of applicable legal rules in Australian states and territories, and highlight significant differences and ambiguities. Our analysis includes recommendations for reform to improve clarity and consistency in the law and reduce barriers that may exclude persons with dementia from participating in ethically approved research. Our recommendations seek to advance the national decisionmaking principles recommended by the Australian Law Reform Commission, which emphasize the rights of all adults to make their own decisions and for those with impaired capacity to have access to appropriate supports to help them make decisions that affect their lives. Keywords Research ethics, Law. Dementia, Consent, Substitute decision-making, Advance directives

Ries, N. M., Thompson KA., & Lowe M. (2017) Including People with Dementia in Research: An Analysis of Australian Ethical and Legal Rules and Recommendations for Reform. Journal of Bioethical Inquiry 14(3): 359-374. https://link.springer.com/article/10.1007%2Fs11673-017-9794-9

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Of Parachutes and Participant Protection: Moving Beyond Quality to Advance Effective Research Ethics Oversight (Papers: Holly Fernandez Lynch, et al | December 2018)

Abstract [colored_box]There are several reasons to believe that Institutional Review Boards (IRBs) and Human Research Protection Programs (HRPPs) contribute to ethical research and the protection of research participants, but there are also important reasons to interrogate this belief. Determining whether IRBs and HRPPs “work” requires empirical... More

Abstract [colored_box]There are several reasons to believe that Institutional Review Boards (IRBs) and Human Research Protection Programs (HRPPs) contribute to ethical research and the protection of research participants, but there are also important reasons to interrogate this belief. Determining whether IRBs and HRPPs “work” requires empirical evaluation of whether and how well they actually achieve what they were designed to do. In other words, it is critical to examine their outcomes and not only their procedures and structures. In this response to Tsan, we argue that the concept of IRB and HRPP quality entails three dimensions: (1) effectiveness, (2) procedures and structures likely to promote effectiveness, and (3) features unrelated to effectiveness but nonetheless essential, such as efficiency, fairness, and proportionality. Because not all types of quality necessarily guarantee or entail effectiveness, we suggest that broad quality assessments, including such features as regulatory compliance and other procedural measures suggested by Tsan, are unhelpful as the first step in evaluating IRBs and HRPPs. Instead, we must start with outcomes relevant to effectiveness. To do this, we launched the Consortium to Advance Effective Research Ethics Oversight (AEREO), with a mission to define and specify ways to measure relevant outcomes for research ethics oversight, empirically evaluate whether those outcomes are achieved, test new approaches to achieving them, and ultimately, develop and implement empirically-based policy and practice to advance IRB and HRPP effectiveness. We describe several anticipated AEREO projects and call for collaboration between various stakeholders to more meaningfully evaluate IRB and HRPPs. Keywords Institutional Review Board, research ethics oversight, effectiveness, quality, empirical evaluation

Lynch, H. F., Nicholls, S., Meyer, M. N., & Taylor, H. A. (2018). Of Parachutes and Participant Protection: Moving Beyond Quality to Advance Effective Research Ethics Oversight. Journal of Empirical Research on Human Research Ethics. https://doi.org/10.1177/1556264618812625 Publisher: https://journals.sagepub.com/doi/abs/10.1177/1556264618812625#articleCitationDownloadContainer

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The Ethical Governance of German Physicians, 1890-1939: Are There Lessons from History? (Papers: Robert Dingwall & Vienna Rozelle | 2011)

The limitations of the traditional historiography of the ethical regulation of biomedical research are becoming increasingly well recognized. A simplistic history has been used to justify a simplistic policy, in the elaboration of regulatory instruments associated with a bureaucracy of administration and enforcement that has acquired its own material... More

The limitations of the traditional historiography of the ethical regulation of biomedical research are becoming increasingly well recognized. A simplistic history has been used to justify a simplistic policy, in the elaboration of regulatory instruments associated with a bureaucracy of administration and enforcement that has acquired its own material interests in self-perpetuation and jurisdictional expansion. The official history of institutionalized ethical regulation sees a clear and self-evident line of descent from the Nazi experiments of World War II to the various legal and quasi-legal instruments that now govern most scientific and, increasingly, social scientific practice. Without regulatory interventions, it is claimed, researchers will revert to barbarism. [colored_box]This version of the "rise of bioethics" tends to place considerable emphasis on the Nuremberg Doctors Trial, and the Nuremberg Code promulgated at its conclusion, and to use these as an "origin myth" that legitimizes its professional project. As a narrative, it says little, for example, about the lengthy gap between the conclusion of the Nuremberg trial in 1948 and the development of regulatory interventions for medical research in the victor countries during the 1960s. It tends not to acknowledge the evidence, from writers like Henry Beecher in the United States and Maurice Pappworth in the United Kingdom, that ethically questionable experiments continued in the victor countries well after World War II, a phenomenon explored further by Tal Bolton in a recent PhD. thesis and her article in this journal issue. However, it also tends to equate an absence of regulation with an absence of ethical concern, despite the evidence from Susan Lederer and Sydney Halpern about the effective operation of informal social controls in the United States before World War II. Most crucially, it neglects Jenny Hazelgroves exploration of the difficulty that the prosecutors faced in framing charges against the Nuremberg defendants because they were unable to point to any clear set of regulations or standards in any country other than Germany that could be said to have been violated. . The publication of further analyses of the pre-World War II German experience provides an additional resource for the critical examination of the claims being made about the importance of formal regulation in the maintenance of ethical standards in biomedical research. This body of work has documented the rise of attempts at ethical research governance in Germany from the late nineteenth century through to the 1930s. In so doing, it may seem to provide us with an opportunity to explore the limits of regulation. Why did it fail to protect the victims of the Nazi medical experiments? Why did it seemingly attract so little international interest, despite Germany's leading role in science and biomedicine over much of this period? However, as a number of influential historians of late nineteenth- and early twentieth- century Germany have observed, the study of this period has suffered from the imposition of narrative arcs, influenced by sociology or political science, that see it only as the precursor to the disaster of the Nazi regime. No actor at the time consciously sought this end for their actions: even the Nazi leadership sought power rather than defeat. Accounts that find a logic in the events from the late nineteenth century to the end of World War II may overlook the unintended consequences of actors dealing with contingent events on the basis of partial information interpreted according to what were contemporaneously considered valid knowledge or theories. It is important, then, to avoid constructing an equally simplistic counter-narrative about the general ineffectiveness of regulation.

Dingwall, R and Rozelle, V (2011) The ethical governance of German physicians, 1890–1939: Are there Lessons from History? Journal of Policy History 23(1): 29-52. http://irep.ntu.ac.uk/id/eprint/16649/1/205167_7323%20Dingwall%20Publisher.pdf

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Vulnerability in research subjects: a bioethical taxonomy (Kenneth Kipnis | 2001)

The concept of vulnerability appears to have been grandfathered into the lexicon, lore, and literature of research ethics without undergoing stringent certification. And yet the need for some such notion has long been appreciated. More than 50 years ago, reflecting on the ethical implications of the Nazi medical experiments,... More

The concept of vulnerability appears to have been grandfathered into the lexicon, lore, and literature of research ethics without undergoing stringent certification. And yet the need for some such notion has long been appreciated. More than 50 years ago, reflecting on the ethical implications of the Nazi medical experiments, the authors of the Nuremberg Code emphasized the necessity of the subject’s informed consent, too hastily ruling out, as it quickly became apparent, medical research on children and those with cognitive impairments. In the United States, widely studied episodes such as Willowbrook,1 the Brooklyn Jewish Chronic Disease Hospital Case,2 and the Tuskegee Syphilis Study3 provoked debates that eventually gave birth to our current methods for ensuring the ethical conduct of research. But despite the remarkable circumstances of the subjects involved in those studies—institutionalized children, hospitalized elderly, and impoverished and poorly educated black Alabama males—it is not much of an exaggeration to say that in the minds of many investigators the paradigmatic research subject remains more or less a mature, respectable, moderately well-educated, clearthinking, literate, self-supporting U.S. citizen in good standing—that is, a man who could understand a 12- page consent form and act intelligently on the basis of its contents. While I shall assume in what follows both that the existing guidelines are sufficient to deal ethically with the paradigmatic research subject, and, further, that all those standard protections are reliably in place, the vulnerable research subject nonetheless requires ethical consideration going beyond that baseline. More recently, in the wake of the Nuremberg Code’s shortcomings, systematic attention has been accorded to a motley collection of vulnerable subpopulations. In 1979, for example, the seminal Belmont Report4 briefly considered children, the institutionalized mentally ill, and prisoners, mentioning dependency and compromised capacity for consent as representative hallmarks of vulnerability. There was no effort to be comprehensive. The more recent Federal Regulations on the Protection of Human Subjects (45 CFR 46) implement the requirement that Institutional Review Boards (IRBs) take into account the “special problems of research involving vulnerable populations, such as children, prisoners, pregnant women, mentally disabled persons, or economically or educationally disadvantaged persons” (46–111). Criteria for vulnerability are not discussed although subparts are included with supplementary regulations for some of these groups. Finally, the Final Report of the Advisory Committee on Human Radiation Experiments,5 after reviewing patterns of unethical misconduct in military research, recommended special protections for enlistees.

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Kipnis K. (2001) Vulnerability in research subjects: a bioethical taxonomy. In: National Bioethics Advisory Commission, editor. Ethical and policy issues in research involving human participants. Bethesda: National Bioethics Advisory Commission. pp. G1–G13. http://www.aapcho.org/wp/wp-content/uploads/2012/02/Kipnis-VulnerabilityinResearchSubjects.pdf

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Respect for Human Vulnerability: The Emergence of a New Principle in Bioethics (Papers: Henk ten Have | 2015)

Published/Released on July 10, 2015 | Posted by Admin on November 30, 2018 | Keywords: , , , , , , , ,

Abstract Vulnerability has become a popular though controversial topic in bioethics, notably since 2000. As a result, a common body of knowledge has emerged (1) distinguishing between different types of vulnerability, (2) criticizing the categorization of populations as vulnerable, and (3) questioning the practical implications. It... More

Abstract Vulnerability has become a popular though controversial topic in bioethics, notably since 2000. As a result, a common body of knowledge has emerged (1) distinguishing between different types of vulnerability, (2) criticizing the categorization of populations as vulnerable, and (3) questioning the practical implications. It is argued that two perspectives on vulnerability, i.e., the philosophical and political, pose challenges to contemporary bioethics discourse: they re-examine the significance of human agency, the primacy of the individual person, and the negativity of vulnerability. As a phenomenon of globalization, vulnerability can only be properly addressed in a global bioethics that takes the social dimension of human existence seriously. Keywords Global bioethics, Globalization, Vulnerability, Research ethics, Philosophy of medicine

ten Have, H. Respect for Human Vulnerability: The Emergence of a New Principle in Bioethics. Bioethical Inquiry (2015) 12: 395. https://doi.org/10.1007/s11673-015-9641-9 Publisher: https://link.springer.com/article/10.1007/s11673-015-9641-9

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Rethinking the Vulnerability of Minority Populations in Research (Papers: Wendy Rogers and Margaret Meek Lange | 2013)

Abstract The Belmont Report, produced in 1979 by a United States government commission, includes minority populations among its list of vulnerable research participants. In this article, we consider some previous attempts to understand the vulnerability of minorities in research, and then provide our own account. First we... More

Abstract The Belmont Report, produced in 1979 by a United States government commission, includes minority populations among its list of vulnerable research participants. In this article, we consider some previous attempts to understand the vulnerability of minorities in research, and then provide our own account. First we examine the question of the representation of minorities in research. Then we argue that the best understanding of minorities, vulnerability, and research will begin with a broad understanding of the risk of individual members of minority groups to poor health outcomes. We offer a typology of vulnerability to help with this task. Finally, we show how researchers should be guided by this broad analysis in the design and execution of their research. Vv

Rogers, W., & Lange, M. M. (2013). Rethinking the vulnerability of minority populations in research. American Journal  of Public Health, 103(12), 2141-6.. 2013;103(12). NCBI (Full text available): https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3828952/

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Vulnerability in Research Ethics: a Way Forward (Papers: Margaret Meek Lange, et al | 2013)

Published/Released on July 27, 2013 | Posted by Admin on November 30, 2018 | Keywords: , , , , , ,

Abstract Several foundational documents of bioethics mention the special obligation researchers have to vulnerable research participants. However, the treatment of vulnerability offered by these documents often relies on enumeration of vulnerable groups rather than an analysis of the features that make such groups vulnerable. Recent attempts... More

Abstract Several foundational documents of bioethics mention the special obligation researchers have to vulnerable research participants. However, the treatment of vulnerability offered by these documents often relies on enumeration of vulnerable groups rather than an analysis of the features that make such groups vulnerable. Recent attempts in the scholarly literature to lend philosophical weight to the concept of vulnerability are offered by Luna and Hurst. Luna suggests that vulnerability is irreducibly contextual and that Institutional Review Boards (Research Ethics Committees) can only identify vulnerable participants by carefully examining the details of the proposed research. Hurst, in contrast, defines the vulnerable as those especially at risk of incurring the wrongs to which all research ethics participants are exposed. We offer a more substantive conception of vulnerability than Luna but one that gives rise to a different rubric of responsibilities from Hurst's. While we understand vulnerability to be an ontological condition of human existence, in the context of research ethics, we take the vulnerable to be research subjects who are especially prone to harm or exploitation. Our analysis rests on developing a typology of sources of vulnerability and showing how distinct sources generate distinct obligations on the part of the researcher. Our account emphasizes that the researcher's first obligation is not to make the research participant even more vulnerable than they already are. To illustrate our framework, we consider two cases: that of a vulnerable population involved in international research and that of a domestic population of people with diminished capacity. Keywords Vulnerability, Research ethics, Alzheimer's Disease, Tenofovir case

Lange, M. M., Rogers, W. and Dodds, S. (2013), Vulnerability in Research Ethics: A Way Forward. Bioethics, 27: 333-340. doi:10.1111/bioe.12032 Publiher (PDF available): https://onlinelibrary.wiley.com/doi/abs/10.1111/bioe.12032

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Why bioethics needs a concept of vulnerability (Papers: Wendy Rogers, et al | 2012)

Published/Released on October 08, 2012 | Posted by Admin on November 30, 2018 | Keywords: , , , , , ,

Abstract Concern for human vulnerability seems to be at the heart of bioethical inquiry, but the concept of vulnerability is under-theorized in the bioethical literature. The aim of this article is to show why bioethics needs an adequately theorized and nuanced conception of vulnerability. We first... More

Abstract Concern for human vulnerability seems to be at the heart of bioethical inquiry, but the concept of vulnerability is under-theorized in the bioethical literature. The aim of this article is to show why bioethics needs an adequately theorized and nuanced conception of vulnerability. We first review approaches to vulnerability in research ethics and public health ethics, and show that the bioethical literature associates vulnerability with risk of harm and exploitation, and limited capacity for autonomy. We identify some of the challenges emerging from this literature: in particular, how to reconcile universal human vulnerability with a context-sensitive analysis of specific kinds and sources of vulnerability; and how to reconcile obligations to protect vulnerable persons with obligations to respect autonomy. We then briefly survey some of the theoretical resources available within the philosophical literature to address these challenges, and to assist in understanding the conceptual connections between vulnerability and related concepts such as harm, exploitation, needs, and autonomy. We also sketch out a taxonomy of sources and kinds of vulnerability. Finally, we consider the implications for policy evaluation of making vulnerability an explicit and central focus of bioethics. Our investigation is in the form of a broad survey motivating a research agenda rather than a detailed analysis. Keywords Bioethics, Disabilities, Child molestation, Feminism, Public health, Territories, Productivity, Research ethics. Morality, Informed consent

Rogers, W., Mackenzie, C., & Dodds, S. (2012). Why bioethics needs a concept of vulnerability. International Journal of Feminist Approaches to Bioethics, 5(2), 11-38. doi:10.2979/intjfemappbio.5.2.11 Publisher (PDF available with frre login): https://www.jstor.org/stable/10.2979/intjfemappbio.5.2.11?seq=1#metadata_info_tab_contents

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Research ethics, informed consent and the disempowerment of First Nation peoples (Papers: Juan M Tauri | 2017)

Abstract Recently, Indigenous commentators have begun to analyse the way in which institutional Research Ethics Boards (REBs) engage with Indigenous researchers and participants, respond to Indigenous peoples’ concerns with academic research activities, and scrutinise the ethics proposals of Indigenous scholars. Of particular concern for Indigenous commentators... More

Abstract Recently, Indigenous commentators have begun to analyse the way in which institutional Research Ethics Boards (REBs) engage with Indigenous researchers and participants, respond to Indigenous peoples’ concerns with academic research activities, and scrutinise the ethics proposals of Indigenous scholars. Of particular concern for Indigenous commentators is that the work of REBs often results in the marginalisation of Indigenous approaches to knowledge construction and dissemination, especially in relation to the vexed issue of informed consent. Based on analysis of the results of research with Indigenous researchers and research participants, this paper argues that institutionalised REBs’ preference for ‘universal’ and ‘individualised’ approaches for determining ethical research conduct marginalises Indigenous approaches to ethical research conduct. The paper concludes by calling for a decolonisation of REB processes through recognition of the validity of communal processes for attaining the informed consent of Indigenous research participants. Keywords First Nations, research ethics boards, informed consent, decolonisation

Tauri, J. M. (2018). Research ethics, informed consent and the disempowerment of First Nation peoples. Research Ethics, 14(3), 1–14. https://doi.org/10.1177/1747016117739935 Publisher (Open Access): https://journals.sagepub.com/doi/full/10.1177/1747016117739935

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Qualitative Research Ethics in the Big Data Era (Papers: Arielle Hesse, et al | 2018)

Published/Released on November 05, 2018 | Posted by Admin on November 11, 2018 | Keywords: , , , , , , ,

Abstract This article examines the developments that have motivated this special issue on Qualitative Research Ethics in the Big Data Era. The article offers a broad overview of many pressing challenges and opportunities that the Big Data era raises particularly for qualitative research. Big Data has... More

Abstract This article examines the developments that have motivated this special issue on Qualitative Research Ethics in the Big Data Era. The article offers a broad overview of many pressing challenges and opportunities that the Big Data era raises particularly for qualitative research. Big Data has introduced to the social sciences new data sources, new research methods, new researchers, and new forms of data storage that have immediate and potential effects on the ethics and practice of qualitative research. Drawing from a literature review and insights gathered at a National Science Foundation-funded workshop in 2016, we present five principles for qualitative researchers and their institutions to consider in navigating these emerging research landscapes. These principles include (a) valuing methodological diversity; (b) encouraging research that accounts for and retains context, specificity, and marginalized and overlooked populations; (c) pushing beyond legal concerns to address often messy ethical dilemmas; (d) attending to regional and disciplinary differences; and (e) considering the entire lifecycle of research, including the data afterlife in archives or in open-data facilities. Keywords Big Data, qualitative research, research ethics

Hesse, A., Glenna, L., Hinrichs, C., Chiles, R., & Sachs, C. (2018). Qualitative Research Ethics in the Big Data Era. American Behavioral Scientist. https://doi.org/10.1177/0002764218805806

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The ‘problem’ of undesigned relationality: Ethnographic fieldwork, dual roles and research ethics (Papers: Kirsten Bell | 2018)

Abstract [colored_box]Perhaps the most unique feature of ethnographic fieldwork is the distinctive form of relationality it entails, where the ethnographer’s identity as a researcher is not fixed in the way typical of most other forms of research. In this paper, I explore how this ‘undesigned relationality’... More

Abstract [colored_box]Perhaps the most unique feature of ethnographic fieldwork is the distinctive form of relationality it entails, where the ethnographer’s identity as a researcher is not fixed in the way typical of most other forms of research. In this paper, I explore how this ‘undesigned relationality’ is understood, both in procedural ethics frameworks and by the different disciplines that have come to claim a stake in the ‘method’ itself. Demonstrating that the ethical issues it entails are primarily conceptualized via the lens of the ‘dual role’, I use this as a means of exploring the ideal relationship between researcher and subject that procedural ethics frameworks are premised upon. I go on to explore the epistemological differences in ways that ethnographers themselves understand and respond to the multiple forms of relationality that characterize fieldwork and the challenge this poses to the possibility of a pan-disciplinary consensus on ethnographic research ethics. . Keywords ethnography, research ethics, dual roles, disciplinarity, relationality .

Bell, K. (2018). The ‘problem’ of undesigned relationality: Ethnographic fieldwork, dual roles and research ethics. Ethnography. https://doi.org/10.1177/1466138118807236

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Research with former refugees: Moving towards an ethics in practice (Nisha Thapliyal and Sally Baker | September 2018)

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Practical, Epistemological, and Ethical Challenges of Participatory Action Research: A Cross-Disciplinary Review of the Literature (Papers: Danielle Lake and Joel Wendland | 2018)

Published/Released on September 15, 2018 | Posted by Admin on October 9, 2018 | Keywords: , , , , , , , , , , ,

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What information and the extent of information research participants need in informed consent forms: a multi-country survey (Juntra Karbwang, et al | 2018)

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Contextualising Merit and Integrity within Human Research (Papers: Ian Pieper and Colin Thomson | 2014)

Abstract The first consideration of any Australian Human Research Ethics Committee should be to satisfy itself that the project before them is worth undertaking. If the project does not add to the body of knowledge, if it does not improve social welfare or individual wellbeing then... More

Abstract The first consideration of any Australian Human Research Ethics Committee should be to satisfy itself that the project before them is worth undertaking. If the project does not add to the body of knowledge, if it does not improve social welfare or individual wellbeing then the use of human participants, their tissue or their data must be questioned. Sometimes, however, committees are criticised for appearing to adopt the role of scientific review committees. The intent of this paper is to provide researchers with an understanding of the ethical importance of demonstrating the merit of their research project and to help them develop protocols that show ethics committees that adequate attention has been paid to this central tenet in dealing ethically with human research participants. Any person proposing human research must be prepared to show that it is worthwhile. This paper will clarify the relationship between research merit and integrity, research ethics and the responsibilities of human research ethics committees. Keywords Human Research, National Statement, Australian Code, Integrity, Article

Pieper, I. & Thomson, C.J.H. (2011) Contextualising Merit and Integrity within Human Research, Monash Bioethics Review  29: 39. https://doi.org/10.1007/BF03351329 Publisher: https://link.springer.com/article/10.1007/BF03351329

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Justice in Human Research Ethics (Papers: Ian Pieper and Colin Thomson | 2014)

Abstract One of the core values to be applied by a body reviewing the ethics of human research is justice. The inclusion of justice as a requirement in the ethical review of human research is relatively recent and its utility had been largely unexamined until debates... More

Abstract One of the core values to be applied by a body reviewing the ethics of human research is justice. The inclusion of justice as a requirement in the ethical review of human research is relatively recent and its utility had been largely unexamined until debates arose about the conduct of international biomedical research in the late 1990s. The subsequent amendment of authoritative documents in ways that appeared to shift the meaning of conceptions of justice generated a great deal of controversy. Another difficulty has been that both the theory and the substance of justice that are applied by researchers or reviewers can be frequently seen to be subjective. Both the concept of justice — whether distributive or commutative — and what counts as a just distribution or exchange — are given different weight and meanings by different people. In this paper, the origins and more recent debates about the requirement to consider justice as a criterion in the ethical review of human research are traced, relevant conceptions of justice are distinguished, and the manner in which they can be applied meaningfully in the ethical review of all human research is identified. We also explain the way that these concepts are articulated in, and the intent and function of, specific paragraphs of the National Statement on Ethical Conduct in Human Research (2007). The National Statement identifies a number of issues that should be considered when a human research ethics committee is reviewing the justice aspects of an application. We provide guidance to researchers as to how they can show that there is a fair distribution of burdens and benefits in the participant experience and the research outcomes. We also provide practical guidance to researchers on how to think through issues of justice so that they can demonstrate that the design of their research projects meets this ethical requirement. Keywords Human Research, National Statement, Human Research Ethics, Distributive Justice

Pieper, I. & Thomson, C.J.H. (2013) Justice in Human Research Ethics. Monash Bioethics Review (2013) 31: 99. Publisher: https://link.springer.com/article/10.1007/BF03351345#citeas

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Research ethics versus ethical approval: A response to Tomaselli (Papers: Katie Fitzpatrick | 2017)

Keyan Tomaselli’s opinion piece provides a great deal of food for thought about a wide range of issues in research. I want to pick up here on one point he makes, which I think is worth further consideration: the issue of research ethics and approvals in ethnography. He notes... More

Keyan Tomaselli’s opinion piece provides a great deal of food for thought about a wide range of issues in research. I want to pick up here on one point he makes, which I think is worth further consideration: the issue of research ethics and approvals in ethnography. He notes that “bio-medical ethical models are imposed on anthropologists” and he raises concerns about how universities engage in the gate keeping of research approvals. This is an important point and one that might usefully be explored further in future issues of this journal. It seems to me that ethical approval has, indeed, been divorced from the academic field of research ethics, especially in qualitative research. As Tomaselli notes, we might question the right of “organisations [to] claim jurisdiction over the right of adult individuals or researchers to make their own respective choices”. I think we might also seek to uphold the rights of young people—not only adults—to make decisions about the kinds of research they engage in and how their voices are represented therein. Ethical issues in ethnographic research are, indeed, complex, locally and culturally specific, and are difficult to regulate. Part of this difficulty lies in the fact that ethnographic research is, by definition, relational. Romero and Walker (2010, 209) observe that “some of the most prevalent methodological and ethical questions in contemporary ethnographic research concern whose voice is heard and how it is represented”. They note that “in theory and in practice, Institutional Review Boards require that the identity of individuals be protected and remain anonymous or at very least confidential” [sic] (223). Many ethnographers adhere to this approach because they are committed to protecting the identities of their participants, especially when the research concerns personal, legal, sexual or other sensitive materials. However, an assumption that people’s identities should and will be obscured in research representations is also problematic, especially when this decision is made prior to even entering the field.

Fitzpartrick, Katie. 2017. “ Research ethics versus ethical approval: A response to Tomaselli.” The Ethnograhic Edge  1, (1): 21– 33. http://dx.doi.org/10.14663/tee.v1i1.20 Publisher: http://dx.doi.org/10.14663/tee.v1i1.20

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‘Telling our story… Creating our own history’: caregivers’ reasons for participating in an Australian longitudinal study of Indigenous children (Papers: Katherine Ann Thurber, et al | 2018)

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Indigenous Data Sovereignty: University Institutional Review Board Policies and Guidelines and Research with American Indian and Alaska Native Communities (Papers: Tennille L. Marley | 2018)

Abstract American Indians, Alaska Native, and other Indigenous people throughout the world have undergone and continue to experience research abuses. Qualitative data such as intellectual property, Indigenous knowledge, interviews, cultural expressions including songs, oral histories/stories, ceremonies, dances, and other texts, images, and recordings are at risk... More

Abstract American Indians, Alaska Native, and other Indigenous people throughout the world have undergone and continue to experience research abuses. Qualitative data such as intellectual property, Indigenous knowledge, interviews, cultural expressions including songs, oral histories/stories, ceremonies, dances, and other texts, images, and recordings are at risk of exploitation, appropriation, theft, and misrepresentation and threaten the cultural sovereignty of American Indians, Alaska Native, and other Indigenous people. These issues are potentially magnified with the increasing use of big data. Partly as a result of past and current research abuse, the Indigenous data sovereignty, the control, ownership, and governance of research and data, is growing. In this article, I discuss American Indian political sovereignty, cultural sovereignty, and Indigenous data sovereignty, with an emphasis on qualitative data sovereignty. In addition, I explore whether Arizona’s public universities—Northern Arizona University, Arizona State University, and University of Arizona—policies and guidelines support Indigenous data sovereignty and the extent to which they align with the Arizona Board of Regent’s tribal consultation policy that governs relations between the three Arizona universities and Arizona American Indian nations. Overall expectations, requirements, and processes do not go far enough in supporting Indigenous data sovereignty. Although each university has specific research policies that follow the Arizona Board of Regent’s tribal consultation policy, the university guidelines differ in scope in term of supporting Indigenous data sovereignty. In addition, none of the policies address qualitative data sharing, including those in big data sets. Based on the findings I make several recommendations for researchers, including supporting the Indigenous sovereignty movement and to reconsider big data use and past positions about qualitative data ownership and sharing with regard to American Indians, Alaska Native, and other Indigenous people. Keywords Indigenous data sovereignty, American Indian and Alaska Native, Indigenous people, qualitative data

Marley, T. L. "Indigenous Data Sovereignty: University Institutional Review Board Policies and Guidelines and Research with American Indian and Alaska Native Communities." American Behavioral Scientist 0(0): 0002764218799130. Publisher: http://journals.sagepub.com/doi/abs/10.1177/0002764218799130#articleCitationDownloadContainer

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Compensation for research-related harm: The implications of Venter v Roche Products (Pty) Limited and Others for research ethics committees (Papers: Ann Strode & Priya P. Singh | 2014)

Published/Released on August 01, 2014 | Posted by Admin on September 13, 2018 | Keywords: , , , , , , , ,

Background. The issue of what type of compensation a research participant would be entitled to in a clinical trial when they have signed an informed consent document excluding certain forms of compensation recently came before our courts in the matter of Venter v Roche Products (Pty)... More

Background. The issue of what type of compensation a research participant would be entitled to in a clinical trial when they have signed an informed consent document excluding certain forms of compensation recently came before our courts in the matter of Venter v Roche Products (Pty) Limited and Others (Case No. 12285/08). In this case, the court had to consider whether the plaintiff, Mr Venter, was entitled to claim for non-medical costs such as pain and suffering, loss of income and general damages, even though the informed-consent document expressly excluded such claims. Objectives. To set out the facts, issues and judgment in the case, concluding with a discussion of the implications of the judgment for research ethics committees (RECs). Methods. Critical review of a judgment of the Western Cape High Court. Results. The court concluded that Mr Venter’s application for damages should be dismissed because he had voluntarily agreed to the limited compensation as set out in the informed consent form that had been approved by both the local RECs and the Medicines Control Council. Conclusions. The Venter case has shown that delictual claims for research-related injuries will not be successful if plaintiffs have agreed to limit their own rights through signing an informed-consent form that limits compensation. This places an important obligation on RECs to ensure that they carefully review compensation clauses in informed-consent documents and that these are made clear to potential research participants.

Strode, A., & Singh, P. (2014). Compensation for research-related harm: The implications of Venter v Roche Products (Pty) Limited and Others for research ethics committees. South African Medical Journal, 104(11), 759-761. doi:10.7196/SAMJ.8596 http://www.samj.org.za/index.php/samj/article/view/8596/6379

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Research ethics in the Kalahari: issues, contradictions and concerns (Papers: Keyan Tomaselli | 2017)

Abstract The effects of ethical clearance or institutional review board practices are discussed in relation to the experiences of academic field researchers on the one hand and indigenous research participants and/or co-generators of knowledge on the other. Ethical procedures such as protection (do no harm), control... More

Abstract The effects of ethical clearance or institutional review board practices are discussed in relation to the experiences of academic field researchers on the one hand and indigenous research participants and/or co-generators of knowledge on the other. Ethical procedures such as protection (do no harm), control (micromanaging methods) and exploitation (taking ownership) are discussed in relation to researcher experiences in southern Africa. Researcher–researched relations, researcher and subject alienation, ethics creep and the clash of ontologies are examined. Some tentative solutions are proposed. Keywords: ethics, gatekeepers, indigenous rights, institutional review board, Kalahari, ≠Khomani Bushmen

Tomaselli, K.G. (2017): Ethical Procedures? A Critical Intervention: The sacred, the profane, and the planet. The Ethnographic Edge, [S.l.], v. 1, n. 1, p. 3-16. Publisher: https://www.tandfonline.com/doi/abs/10.1080/02560046.2016.1267253

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Too dangerous for fieldwork? The challenge of institutional risk-management in primary research on conflict, violence and ‘Terrorism’ (Papers: Jeffrey Sluka | July 2018)

Published/Released on July 16, 2018 | Posted by Admin on September 3, 2018 | Keywords: , ,

Research on conflict and ‘terrorism’ is confronted by an expanding range of daunting ethical, methodological, and institutional challenges. One of these is the increasing involvement of university ethics and fieldwork safety committees in ‘managing’ researcher safety and security as an issue which requires institutional oversight, control, and approval. This... More

Research on conflict and ‘terrorism’ is confronted by an expanding range of daunting ethical, methodological, and institutional challenges. One of these is the increasing involvement of university ethics and fieldwork safety committees in ‘managing’ researcher safety and security as an issue which requires institutional oversight, control, and approval. This paper contributes to contemporary reflection on and conversations about social sciences fieldwork in what is deemed to be an increasingly dangerous world. It focuses specifically on the increasing application of institutional ethics and safety review processes to ‘dangerous’ fieldwork on socio-political violence. While these new restrictions are clothed in the language or idiom of ethics and worker safety and security, a political analysis suggests that these committees represent powerful institutions of censorship and control, a serious challenge to academic freedom, and even movement towards the recolonisation of social science research. This paper describes and addresses this threat, and offers a constructive proposal for potentially responding by the development of risk assessment and management protocols which may contribute both to researcher survival in perilous field sites and help researchers to negotiate the necessary approval by university ethics and safety committees.

luka, J. A. (2018). Too dangerous for fieldwork? The challenge of institutional risk-management in primary research on conflict, violence and ‘Terrorism’. Contemporary Social Science, 1-17. doi:10.1080/21582041.2018.1498534 Publisher: https://www.tandfonline.com/doi/abs/10.1080/21582041.2018.1498534 ResearchGate: https://www.researchgate.net/publication/326437314

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Research with, not about, communities – Ethical guidance towards empowerment in collaborative research, a report for the TRUST project – TRUST (Kate Chatfield, et al | July 2018)

Executive Summary and Introduction Community engagement is an ethical imperative (a ‘must’) for researchers operating globally. Research participants, their local communities and research partners in international locations should be equal stakeholders1 in the pursuit of research-related gains.2,3 [colored_box]In the 1990s, community engagement became prominent as the new... More

Executive Summary and Introduction Community engagement is an ethical imperative (a ‘must’) for researchers operating globally. Research participants, their local communities and research partners in international locations should be equal stakeholders1 in the pursuit of research-related gains.2,3 [colored_box]In the 1990s, community engagement became prominent as the new guiding light of public health efforts. Involving communities in research and health-improvement programs led to better results than government-led programs alone.4 At the same time, the emerging need to protect indigenous communities in genetic research led Canadian Charles Weijer to demand a fifth principle in bioethics5,6: protection for communities.7 The individualistic nature of existing research ethics principles, stemming from US origins with its traditional emphasis upon individual autonomy was thus questioned. Asian and African ethicists added their voices to highlight the importance of respect for communities, as well as individuals.8,9 . This report provides guidance on community engagement in research from the perspective of the four TRUST values: fairness, respect, care and honesty. . These values were identified by a global group of experts as the cornerstones of equitable research partnerships between high-income country (HIC) and low- and middle-income country (LMIC) research partners in any discipline10. The group included representatives from two vulnerable populations that carry a high burden of research: Kenyan sex workers and San indigenous peoples of Southern Africa. The guidance is suitable for all who support vulnerable populations involved in research projects, including civil society organisations, whether or not they are carrying out the research projects themselves. .

Chatfield, K. et al. (2018) Research with, not about, communities - Ethical guidance towards empowerment in collaborative research, a report for the TRUST project.  http://trust-project.eu/wp-content/uploads/2018/07/TRUST-Community-Participation-in-Research-Final.pdf

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Ethical Considerations When Using Social Media for Evidence Generation (Papers: Gabrielle Berman, et al | 2018)

ABSTRACT There are significant ethical implications in the adoption of technologies and the production and use of the resulting data for evidence generation. The potential benefits and opportunities need to be understood in conjunction with the potential risks and challenges. When using social media to directly... More

ABSTRACT There are significant ethical implications in the adoption of technologies and the production and use of the resulting data for evidence generation. The potential benefits and opportunities need to be understood in conjunction with the potential risks and challenges. When using social media to directly engage children and their communities, or when establishing partnerships with these organizations for data collection and analysis, adoption of these technologies and their resultant data should not be exclusively driven by short-term necessity but also by the long-term needs of our younger partners. When engaging with social media and indeed most technology, thoughtfulness, reflection and ongoing interrogation is required. This paper examines the benefits, risks and ethical considerations when undertaking evidence generation: (a) using social media platforms and (b) using third-party data collected and analysed by social media services. It is supplemented by practical tools to support reflection on the ethical use of social media platforms and social media data.

Berman, Gabrielle; Powell, James; Garcia Herranz, Manuel (2018). Ethical Considerations When Using Social Media for Evidence Generation, Innocenti Discussion Papers no. 2018-01, UNICEF Office of Research - Innocenti, Florence https://www.unicef-irc.org/publications/967-ethical-considerations-when-using-social-media-for-evidence-generation-discussion.html

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Ethical Considerations When Using Geospatial Technologies for Evidence Generation (Papers: Gabrielle Berman, et al | 2018)

ABSTRACT Geospatial technologies have transformed the way we visualize and understand social phenomena and physical environments. There are significant advantages in using these technologies and data however, their use also presents ethical dilemmas such as privacy and security concerns as well as the potential for stigma... More

ABSTRACT Geospatial technologies have transformed the way we visualize and understand social phenomena and physical environments. There are significant advantages in using these technologies and data however, their use also presents ethical dilemmas such as privacy and security concerns as well as the potential for stigma and discrimination resulting from being associated with particular locations. Therefore, the use of geospatial technologies and resulting data needs to be critically assessed through an ethical lens prior to implementation of programmes, analyses or partnerships. This paper examines the benefits, risks and ethical considerations when undertaking evidence generation using geospatial technologies. It is supplemented by a checklist that may be used as a practical tool to support reflection on the ethical use of geospatial technologies.

Berman, Gabrielle; de la Rosa, Sara; Accone, Tanya (2018). Ethical Considerations When Using Geospatial Technologies for Evidence Generation, Innocenti Discussion Papers no. 2018-02, UNICEF Office of Research - Innocenti, Florence https://www.unicef-irc.org/publications/971-ethical-considerations-when-using-geospatial-technologies-for-evidence-generation.html

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Self-Determination in Health Research: An Alaska Native Example of Tribal Ownership and Research Regulation (Vanessa Y. Hiratsuka, et al | 2017)

Abstract

[colored_box]Alaska Native (AN) and American Indian (AI) people are underrepresented in health research, yet many decline to participate in studies due to past researcher misconduct. Southcentral Foundation (SCF), an Alaska Native-owned and operated health care organization, is transforming... More

Abstract

[colored_box]Alaska Native (AN) and American Indian (AI) people are underrepresented in health research, yet many decline to participate in studies due to past researcher misconduct. Southcentral Foundation (SCF), an Alaska Native-owned and operated health care organization, is transforming the relationship between researchers and the tribal community by making trust and accountability required features of health research in AN/AI communities. In 1998, SCF assumed ownership from the federal government of health services for AN/AI people in south central Alaska and transformed the health system into a relationship-based model of care. This change reimagines how researchers interact with tribal communities and established community oversight of all health research conducted with AN/AI people in the region. We describe the SCF research review process, which requires tribal approval of the research concept, full proposal, and dissemination products, as well as local institutional review board approval, and a researcher-signed contract. This review evaluates research through the lens of tribal principles, practices, and priorities. The SCF example provides a framework for other tribes and organizations seeking to reshape the future of health research in AN/AI communities. .

Keywords: community review, Alaska Native, tribal, ethics, Native American, research, research conduct, trust, accountability .

Hiratsuka, V. Y., Beans, J. A., Robinson, R. F., Shaw, J. L., Sylvester, I., & Dillard, D. A. (2017). Self-determination in health research: An Alaska Native example of Tribal ownership and research regulation. International Journal of Environmental Research and Public Health, 14(11), 1324. http://dx.doi.org/10.3390/ijerph14111324 Publisher (Open Access): https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5707963/

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Conducting Research with Tribal Communities: Sovereignty, Ethics, and Data-Sharing Issues (Papers: Anna Harding, et al | 2011)

Abstract

Background: When conducting research with American Indian tribes, informed consent beyond conventional institutional review board (IRB) review is needed because of the potential for adverse consequences at a community or governmental level that are unrecognized by academic researchers.

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Abstract

Background: When conducting research with American Indian tribes, informed consent beyond conventional institutional review board (IRB) review is needed because of the potential for adverse consequences at a community or governmental level that are unrecognized by academic researchers.

Objectives: In this article, we review sovereignty, research ethics, and data-sharing considerations when doing community-based participatory health–related or natural-resource–related research with American Indian nations and present a model material and data-sharing agreement that meets tribal and university requirements.

Discussion: Only tribal nations themselves can identify potential adverse outcomes, and they can do this only if they understand the assumptions and methods of the proposed research. Tribes must be truly equal partners in study design, data collection, interpretation, and publication. Advances in protection of intellectual property rights (IPR) are also applicable to IRB reviews, as are principles of sovereignty and indigenous rights, all of which affect data ownership and control.

Conclusions: Academic researchers engaged in tribal projects should become familiar with all three areas: sovereignty, ethics and informed consent, and IPR. We recommend developing an agreement with tribal partners that reflects both health-related IRB and natural-resource–related IPR considerations.

Keywords: American Indian, data sharing, informed consent, intellectual property, IRB, research ethics, sovereignty, tribal

Harding A, Harper B, Stone D, O’Neill C, Berger P, et al. (2011) Conducting Research with Tribal Communities: Sovereignty, Ethics, and Data-Sharing Issues. Environmental Health Perspectives.  120: 6–10. pmid:21890450 Publisher (Open Access): https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3261947/

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Moving Forward on Consent Practices in Australia (Papers: Rebekah E. McWhirter & Lisa Eckstein | 2018))

Abstract Allowing persons to make an informed choice about their participation in research is a pre-eminent ethical and legal requirement. Almost universally, this requirement has been addressed through the provision of written patient information sheets and consent forms. Researchers and others have raised concerns about the... More

Abstract Allowing persons to make an informed choice about their participation in research is a pre-eminent ethical and legal requirement. Almost universally, this requirement has been addressed through the provision of written patient information sheets and consent forms. Researchers and others have raised concerns about the extent to which such forms—particularly given their frequent lengthiness and complexity—provide participants with the tools and knowledge necessary for autonomous decision-making. Concerns are especially pronounced for certain participant groups, such as persons with low literacy and Indigenous persons. Multimedia strategies have the potential to usefully supplement current consent practices in Australia; however, information is needed about the need for supplementary consent practices, along with drivers for and barriers against adoption. This study initiates the required evidence base through an audit of informed consent practices for medical research in the Australian state of Tasmania to assess the need for, and current uptake of, supplementary consent strategies. Drivers for and barriers against adoption of multimedia consent practices were explored in detail through interviews with key stakeholders, including researchers, HREC chairs and members, and research participants, including Indigenous participants. Keywords Informed consent, Research ethics, Multimedia consent, Consent apps

McWhirter, RE and Eckstein, L (2018) Moving Forward on Consent Practices in Australia. Journal of Bioethical Inquiry. Published online: 12 March 2018 https://doi.org/10.1007/s11673-018-9843-z

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Research, Ethics and Indigenous Peoples: An Australian Indigenous perspective on three threshold considerations for respectful engagement (Ambelin Kwaymullina | 2016)

Abstract [colored_box]Indigenous peoples have long critiqued the harmful effects of Eurocentric research processes upon Indigenous cultures and communities. This paper—which is grounded in the author's knowledge and experience as an Aboriginal Australian academic—examines three threshold considerations relevant to non-Indigenous scholars who seek to enter... More

Abstract [colored_box]Indigenous peoples have long critiqued the harmful effects of Eurocentric research processes upon Indigenous cultures and communities. This paper—which is grounded in the author's knowledge and experience as an Aboriginal Australian academic—examines three threshold considerations relevant to non-Indigenous scholars who seek to enter into respectful research relationships with Indigenous peoples or knowledges. The first is the question of whether the research should be conducted at all. The second is positionality and how this affects research. The third is the need for scholars to comprehensively inform themselves about ethical research principles, including in relation to free, prior and informed consent, and Indigenous cultural and intellectual property. .

Keywords research, colonialism, sovereignty, free, prior and informed consent, ethics, Indigenous peoples .

Kwaymullina, A. (2016). "Research, Ethics and Indigenous Peoples: An Australian Indigenous perspective on three threshold considerations for respectful engagement." AlterNative: An International Journal of Indigenous Peoples 12(4): 437-449. Publisher: http://journals.sagepub.com/doi/abs/10.20507/AlterNative.2016.12.4.8#articleCitationDownloadContainer

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Research ethics committees in the Pacific Islands: gaps and opportunities for health sector strengthening (Papers: Justin T Denholm, et al | 2017)

Abstract There has been a range of developments in recent years to stimulate increasing public health research activity throughout the Pacific. Development of local capacity for ethics committee review and oversight is, however, frequently underdeveloped. This is reflected in the number of Pacific Island nations where... More

Abstract There has been a range of developments in recent years to stimulate increasing public health research activity throughout the Pacific. Development of local capacity for ethics committee review and oversight is, however, frequently underdeveloped. This is reflected in the number of Pacific Island nations where ethics committees have not been established or where only informal processes exist for ethics review and oversight. This is problematic for the optimal development of relevant and culturally appropriate research, and building up local ethics committees should be part of continued research development in the Pacific. Three areas in which local ethics committees may add value are 1) offering better capacity to reflect local priorities, 2) providing broader benefits for research capacity building, and 3) assisting to strengthen systems beyond research ethics. This article considers benefits and challenges for ethics committees in the Pacific, and suggests directions for regional development to further strengthen public health research activity. Keywords: research ethics, Pacific Islands, operational research, public health, ethics

J. T. Denholm, K. Bissell, K. Viney, A. M. Durand, H. L. Cash, C. Roseveare, O. E. Merilles, Jr., A. D. Harries and S. Biribo (2017) Research ethics committees in the Pacific Islands: gaps and opportunities for health sector strengthening. Public Health Action. 2017 Mar 21; 7(1): 6–9. Published online 2017 Mar 21. doi: 10.5588/pha.16.0076 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5526493/

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Why all randomised controlled trials produce biased results (Papers: Alexander Krauss | March 2018)

Abstract Background: Randomised controlled trials (RCTs) are commonly viewed as the best research method to inform public health and social policy. Usually they are thought of as providing the most rigorous evidence of a treatment’s effectiveness without strong assumptions, biases and limitations. Objective:... More

Abstract Background: Randomised controlled trials (RCTs) are commonly viewed as the best research method to inform public health and social policy. Usually they are thought of as providing the most rigorous evidence of a treatment’s effectiveness without strong assumptions, biases and limitations. Objective: This is the first study to examine that hypothesis by assessing the 10 most cited RCT studies worldwide. Data sources: These 10 RCT studies with the highest number of citations in any journal (up to June 2016) were identified by searching Scopus (the largest database of peer-reviewed journals). Results: This study shows that these world-leading RCTs that have influenced policy produce biased results by illustrating that participants’ background traits that affect outcomes are often poorly distributed between trial groups, that the trials often neglect alternative factors contributing to their main reported outcome and, among many other issues, that the trials are often only partially blinded or unblinded. The study here also identifies a number of novel and important assumptions, biases and limitations not yet thoroughly discussed in existing studies that arise when designing, implementing and analysing trials. Conclusions: Researchers and policymakers need to become better aware of the broader set of assumptions, biases and limitations in trials. Journals need to also begin requiring researchers to outline them in their studies. We need to furthermore better use RCTs together with other research methods. Key messages

  • RCTs face a range of strong assumptions, biases and limitations that have not yet all been thoroughly discussed in the literature.
  • This study assesses the 10 most cited RCTs worldwide and shows that trials inevitably produce bias.
  • Trials involve complex processes – from randomising, blinding and controlling, to implementing treatments, monitoring participants etc. – that require many decisions and steps at different levels that bring their own assumptions and degree of bias to results.
Keywords: Randomised controlled trial, RCT, reproducibility crisis, replication crisis, bias, statistical bias, evidence-based medicine, evidence-based practice, reproducibility of results, clinical medicine, research design

Krauss, A. (2018) Why all randomised controlled trials produce biased results. Annals of Medicine. 50:4, 312-322, DOI: 10.1080/07853890.2018.1453233 Publisher (Open Access): https://www.tandfonline.com/doi/full/10.1080/07853890.2018.1453233

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Implementing the Tri-Council Policy on Ethical Research Involving Indigenous Peoples in Canada: So, How’s That Going in Mi’kma’ki? (Carla Moore | April 2017)

Abstract The 2010 edition of the Tri-Council Policy Statement on Ethical Conduct for Research Involving Humans introduced a new chapter, titled "Research Involving the First Nations, Inuit and Métis Peoples of Canada." The goal of our study was to explore how this chapter is being implemented... More

Abstract The 2010 edition of the Tri-Council Policy Statement on Ethical Conduct for Research Involving Humans introduced a new chapter, titled "Research Involving the First Nations, Inuit and Métis Peoples of Canada." The goal of our study was to explore how this chapter is being implemented in research involving Mi’kmaw communities in Nova Scotia. Qualitative data from four groups—health researchers, research ethics board representatives, financial services administrators, and Mi’kmaw community health directors—revealed that while the chapter is useful in navigating this ethical space, there is room for improvement. The challenges they encountered were not insurmountable; with political will from the academy and with guidance from Indigenous community health and research leaders solutions to these barriers can be achieved.

Moore, C. , Castleden, H. E. , Tirone, S. , Martin, D. (2017). Implementing the Tri-Council Policy on Ethical Research Involving Indigenous Peoples in Canada: So, How’s That Going in Mi’kma’ki?. The International Indigenous Policy Journal, 8(2) . Retrieved from: http://ir.lib.uwo.ca/iipj/vol8/iss2/4 DOI: 10.18584/iipj.2017.8.2.4 Publisher (Open Access): https://ir.lib.uwo.ca/iipj/vol8/iss2/4/

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Administering Colonial Science: Nutrition Research and Human Biomedical Experimentation in Aboriginal Communities and Residential Schools, 1942-1952 (Papers: Ian Mosvy | 2013)

Between 1942 and 1952, some of Canada’s leading nutrition experts, in cooperation with various federal departments, conducted an unprecedented series of nutritional studies of Aboriginal communities and residential schools. The most ambitious and perhaps best known of these was the 1947-1948 James Bay Survey... More

Between 1942 and 1952, some of Canada’s leading nutrition experts, in cooperation with various federal departments, conducted an unprecedented series of nutritional studies of Aboriginal communities and residential schools. The most ambitious and perhaps best known of these was the 1947-1948 James Bay Survey of the Attawapiskat and Rupert’s House Cree First Nations. Less well known were two separate long-term studies that went so far as to include controlled experiments conducted, apparently without the subjects’ informed consent or knowledge, on malnourished Aboriginal populations in Northern Manitoba and, later, in six Indian residential schools. This article explores these studies and experiments, in part to provide a narrative record of a largely unexamined episode of exploitation and neglect by the Canadian government. At the same time, it situates these studies within the context of broader federal policies governing the lives of Aboriginal peoples, a shifting Canadian consensus concerning the science of nutrition, and changing attitudes towards the ethics of biomedical experimentation on human beings during a period that encompassed, among other things, the establishment of the Nuremberg Code of experimental research ethics.
[colored_box]IN MARCH 1942, and after months of planning, a group of scientific and medical researchers travelled by bush plane and dog sled to the Cree communities of Norway House, Cross Lake, God’s Lake Mine, Rossville, and The Pas in Northern Manitoba. The trip was jointly sponsored by Indian Affairs, the New York-based Milbank Memorial Fund, the Royal Canadian Air Force (RCAF) and the Hudson’s Bay Company but had been spearheaded by Indian Affairs Branch Superintendent of Medical Services Dr. Percy Moore and RCAF Wing Commander Dr. Frederick Tisdall – Canada’s leading nutrition expert and the co-inventor of the infant food Pablum. The goal was to “study the state of nutrition of the Indian by newly developed medical procedures,” which meant that – in addition to collecting information on local subsistence patterns – the research team conducted detailed physical examinations, blood tests, and x-rays on nearly 400 Aboriginal residents of these communities.1 But even before they began to administer their battery of medical tests, the researchers were immediately struck by the frightening toll that malnutrition and hunger appeared to be taking. At both Norway House and Cross Lake, they reported that, “while most of the people were going about trying to make a living, they were really sick enough to be in bed under treatment and that if they were white people, they would be in bed and demanding care and medical attention.” Following a visit to the homes of some of the elderly residents of Norway House at the request of the Chief and Council, moreover, researchers found that “conditions were deplorable where the old people were almost starved and were plainly not get- ting enough food to enable them to much more than keep alive.” .

Mosby, I. (2013) “Administering Colonial Science: Nutrition Research and Human Biomedical Experimentation in Aboriginal Communities and Residential Schools, 1942-1952” Histoire sociale/Social History XLVI, 91 (Mai/May 2013), 615-642. Publisher (Open Access): https://hssh.journals.yorku.ca/index.php/hssh/article/viewFile/40239/36424

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Should we try to manage non-financial interests? (Papers: Miriam Wiersma, et al)

Ideological biases influence medical research and practice and should be disclosed and managed, say Miriam Wiersma and colleagues. But Marc Rodwin argues that many of these interests are widespread and inherent to life and cannot be avoided or eliminated Yes—Miriam Wiersma, Ian... More

Ideological biases influence medical research and practice and should be disclosed and managed, say Miriam Wiersma and colleagues. But Marc Rodwin argues that many of these interests are widespread and inherent to life and cannot be avoided or eliminated Yes—Miriam Wiersma, Ian Kerridge, Wendy Lipworth [colored_box]Non-financial conflicts of interest in medical research and practice, which include those of a political, ideological, individual, or religious nature,1 2 are often overlooked, denied, and even defined out of existence.3 4 The focus is directed instead towards financial interests, such as those stemming from drug industry sponsorship of research, or payments to doctors. But dismissing non-financial conflicts of interest is naive, empirically unfounded, and dangerous. It is also unnecessary because non-financial conflicts can be managed with nuance and sensitivity. . Strong drivers Research shows, and common sense dictates, that people are driven at least as much by non-financial motives as they are by financial gain. These motives, which include the desire to protect ourselves or our family from harm, to reinforce our deeply held beliefs and values, to reciprocate gifts or favours, to attain status, and to avoid social disapproval, unquestionably exert a powerful influence on human behaviour.5 6 As argued by Cappola and Fitzgerald in relation to academia, “the prospect of fame may be even more seductive than fortune.”7 .

Wiersma, M., Kerridge, I,. Lipworth, W., Rodwin, M.. (2018). "Should we try to manage non-financial interests?" BMJ 361. Publisher: https://www.bmj.com/content/361/bmj.k1240

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Evolving friendships and shifting ethical dilemmas: Fieldworkers’ experiences in a short term community based study in Kenya (Papers: Dorcas M. Kamuya, et al | 2013)

Abstract [colored_box]Fieldworkers (FWs) are community members employed by research teams to support access to participants, address language barriers, and advise on culturally appropriate research conduct. The critical role that FWs play in studies, and the range of practical and ethical dilemmas associated with their involvement, is... More

Abstract [colored_box]Fieldworkers (FWs) are community members employed by research teams to support access to participants, address language barriers, and advise on culturally appropriate research conduct. The critical role that FWs play in studies, and the range of practical and ethical dilemmas associated with their involvement, is increasingly recognised. In this paper, we draw on qualitative observation and interview data collected alongside a six month basic science study which involved a team of FWs regularly visiting 47 participating households in their homes. The qualitative study documented how relationships between field workers and research participants were initiated, developed and evolved over the course of the study, the shifting dilemmas FWs faced and how they handled them. Even in this one case study, we see how the complex and evolving relationships between fieldworkers and study participants had important implications for consent processes, access to benefits and mutual understanding and trust. While the precise issues that FWs face are likely to depend on the type of research and the context in which that research is being conducted, we argue that appropriate support for field workers is a key requirement to strengthen ethical research practice and for the long term sustainability of research programmes.

Kamuya, D., Theobald, S.J., Munywoki, P.K., Koech, D., Geissler, W.P. and Molyneux, S.C. (2013) Evolving friendships and shifting ethical dilemmas: Fieldworkers’ experiences in a short term community based study in Kenya. Developing World Bioethics 13(1): 1-9. Publisher (Open Access): https://onlinelibrary.wiley.com/doi/full/10.1111/dewb.12009

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Ethical challenges inherent in the evaluation of an American Indian/Alaskan Native Circles of Care project – American Journal of Community Psychology (David A. Julian, et al | December 2017)

Abstract This article provides first‐person accounts of ethical issues inherent in an evaluation of the Native American Indian Center of Central Ohio (NAICCO) Circles of Care project. Circles of Care is a three‐year, infrastructure development program funded through the Substance Abuse and Mental Health Services Administration... More

Abstract This article provides first‐person accounts of ethical issues inherent in an evaluation of the Native American Indian Center of Central Ohio (NAICCO) Circles of Care project. Circles of Care is a three‐year, infrastructure development program funded through the Substance Abuse and Mental Health Services Administration (SAMHSA) which is part of the federal Department of Health and Human Services (DHHS). The grant program is for American Indian and Alaskan Native (AI/AN) tribes and urban Indian communities and includes a strong emphasis on community engagement and community ownership. The Native American Indian Center of Central Ohio received a Circles of Care grant in the fifth cohort of the program. The first author (Project Evaluator) presents views that typically represent a western approach to evaluation, while the second author (Project Director) presents a Native perspective. Ethical issues are defined as well as the authors’ efforts to address these concerns. Keywords Ethical issues, Culturally responsive evaluation

Julian, D.A., Smith, T., & Hunt, A. (2017). Ethical challenges inherent in the evaluation of an American Indian/Alaskan Native Circles of Care project. American Journal of Community Psychology, 60, 336–345. Publisher: https://onlinelibrary.wiley.com/doi/abs/10.1002/ajcp.12192

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Ethical Challenges and Some Solutions for Field Experiments (Papers: Scott Desposato | November 2014)

Published/Released on November 03, 2014 | Posted by Admin on April 13, 2018 | Keywords: , , , , , , , ,

Abstract The recent controversy over a field experiment conducted in Montana during an election has many political scientists debating the ethics of interventions in “the real world”. Much of this discussion focuses on the fact that the experiment may have violated electoral law and may not... More

Abstract The recent controversy over a field experiment conducted in Montana during an election has many political scientists debating the ethics of interventions in “the real world”. Much of this discussion focuses on the fact that the experiment may have violated electoral law and may not have had all required IRB reviews. However, absent some technical shortcomings, the study is identical to dozens of others that have been run all over the world. The bigger questions here are whether we can ethically run experiments that could affect millions of subjects and bystanders without their consent. I discuss some of the features that distinguish political science from other fields and over some suggestions for best practices in field experiments.

Desposato, S. (2014) 'Ethical Challenges and some Solutions for Field Experiments'. Accessed 13 April 2018 http://www.desposato.org/ethicsfieldexperiments.pdf

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Dealing with Un(Expected) Ethical Dilemma: Experience from the Field (Papers: Zaleha Othman and Fathilatul Zakimi Hamid | 2018)

Abstract Despite the growing interest in qualitative research and discussion of ethics, there has been little focus in the literature on the specific ethical dilemmas faced by researchers. In this paper, we share our fieldwork experiences regarding the ethical dilemmas that we encountered while doing research... More

Abstract Despite the growing interest in qualitative research and discussion of ethics, there has been little focus in the literature on the specific ethical dilemmas faced by researchers. In this paper, we share our fieldwork experiences regarding the ethical dilemmas that we encountered while doing research on a sensitive topic. Specifically, we share some of the ethical dilemmas, that is, concerning confidentiality, anonymity, legitimacy, controversial data, interpretation and off -the-record data, which emerged from the research. Most importantly, this paper shares ideas concerning how researchers might deal with ethical issues while preserving their integrity in the research process. Overall, this paper suggests approaches that qualitative researchers can adopt when doing research on sensitive topics. the paper contributes towards closing an existing gap in the literature, making visible the challenges frequently faced by qualitative researchers, that is, the vulnerability of researchers while preserving research integrity. Finally, this paper concludes with the suggestion that ethical dilemmas are part of the research process in doing qualitative research. However, it is suggested that future research should focus on ethical issues from the perspective of the researchers as well as the respondents. Keywords Ethical Dilemma, Research, Sensitive, Qualitative Research, Con dential, Anonymity

Othman Z. & Abdul Hamid, F. (2018). Dealing with Un(Expected) Ethical Dilemma: Experience from the Field. The Qualitative Report, 23(4), 733-741. Retrieved from https://nsuworks.nova.edu/tqr/vol23/iss4/1 Publisher (Creative Commons): https://nsuworks.nova.edu/tqr/vol23/iss4/1/

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Summary of research for participants and the Health Research Authority ‘An ethnographic study of National Health Service Research Ethics Committees : mapping ethics review’ (Papers: Dr Julie Morton | 2017)

Published/Released on April 03, 2017 | Posted by Admin on March 8, 2018 | Keywords: , , , , , ,

Background to the study Ethical regulation in general and ethics review more specifically are perceived as challenging for researchers and have been subject to critique from both qualitative and quantitative research paradigms. Existing critique clusters around the following themes:

Bureaucracy and its impact... More

Background to the study Ethical regulation in general and ethics review more specifically are perceived as challenging for researchers and have been subject to critique from both qualitative and quantitative research paradigms. Existing critique clusters around the following themes:

Bureaucracy and its impact on research. Authors here suggest that there are unacceptable delays in receiving decisions on ethics in review or that the requirements of review are excessive, unachievable and constitute a barrier to research. (Dingwall, 2006; Hammersley, 2010; Stewart et al (2008).

Dominance of quantitative research paradigms. There is perceived lack of understanding of qualitative research and quantitative ‘bias’ (Burrr and Reynolds (2010); Murphy and Dingwall, 2007; Hammersley, 2009, 2010). Alongside critics of the system, particularly in the social sciences, other commentators have identified the potential educative value of engaging with review systems (Wiles,2012; Guillemin and Gillam, 2004; Israel and Hay, 2006) despite acknowledging some of the (historic) limitations in relation to qualitative research paradigms.

Centrality of the informed consent requirement. This has been problematised from a range of perspectives which view it as unachievable in some methodologies, as necessary but problematic, or as an overly bureaucratic requirement which makes it informed but not necessarily genuine (O’Neill, 2003). The shortcomings of procedural consent in medicine and biomedical contexts and which also relate to consent in research ethics have been highlighted by philosophers (O’Neill 2003; Kittay, 2007; Manson and O’Neil, 2007) while sociologists have commented on the potential privileging of consent over other ethical considerations and described informed consent as an ‘ethical panacea’ (Corrigan, 2003). Furthermore, the importance of context in consent (Greenhough, 2007) and the need for it to be seen as an ongoing process rather than a ‘on-off’ event (Corrigan, 2016) has also been highlighted.

Procedure and principles. Concerns with the overly-procedural nature of review in general is criticism of the principlist approaches which inform the review process. Hammersley (2015) claims that judgements are derived in a ‘quasi- logical way from given principles’ (p445).

Gaps in existing research The literature review evidenced the paucity of discussion about and inquiry into how reviewers in RECs are involved in the review process. Existing accounts of review and the role of consent have not explored how reviewers’ activities are carried out, where procedures and principles are enacted and where judgements about research take place. Exceptions are Hedgecoe (2008; 2009; 2012) in the United Kingdom and Laura Stark on Institutional Review Boards (IRBs) (2012 and 2013) in the United States. Conclusion Much is claimed about the barriers and limitations which the review of ethics presents to researchers, however, there is little evidence which starts from the standpoint of committee members and explores how the work of review is accomplished in the everyday contexts in which decisions are made. Sheehan (2013) has responded to criticisms of the functioning of RECs as over-generalised and therefore inaccurate. He argues that critique requires evidence and this is not always apparent in the arguments for changes in the current system of ethics review. This research provides detailed investigation into RECs to discover how their work is achieved. The focus of the study was NHSRECs which are ‘flagged’ to review studies which involved participants who may lack capacity to consent. This meant that reviewers had undertaken additional training on the Mental Capacity Act 2005.

Morton, JW 2017, Summary of research for participants and the Health Research Authority ‘An ethnographic study of National Health Service Research Ethics Committees : mapping ethics review’ Dr Julie Morton, April 2017 , Project Report, University of Salford. (Unpublished) Institutional reprint (Open Access): http://usir.salford.ac.uk/45160/

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Ubuntu Ethics (Papers: Philip Ogochukwu Ujomudike | 2015)

Published/Released on November 24, 2015 | Posted by Admin on March 4, 2018 | Keywords: , , , , , , , , ,

Abstract This is an entry on ubuntu ethics. The idea is to develop an endogenous African conception of ubuntu as an ethical construct. We attempt to use ubuntu to countermand the current dominant social paradigm (DSP) of hatred, intolerance, abuse of... More

Abstract This is an entry on ubuntu ethics. The idea is to develop an endogenous African conception of ubuntu as an ethical construct. We attempt to use ubuntu to countermand the current dominant social paradigm (DSP) of hatred, intolerance, abuse of human rights, dehumanization, exploitation, authoritarianism, poverty, and oppression that plague the human race at the national and international levels. This work proposes a conception of ubuntu as a value system built upon the application of some key moral and democratic values for liberation and transformation. Specifically, ubuntu ethics is defined as a set of values central among which are reciprocity, common good, peaceful relations, emphasis on human dignity, and the value of human life as well as consensus, tolerance, and mutual respect. These features are to operate at the national level. We also argue for a possibility utilizing ubuntu ethical correlates as materials for establishing stable and viable human relations within the international system or global order. Our aim is to conceptualize ubuntu as an ethical idea and praxis, as well as to situate it as an ethical ideal all with a view to making humans better and thus tackling in a systematic manner, our natural and man-made existential predicaments.

Keywords Ubuntu, Communalism, Community, Human person, Humanity, Dignity, Moral values 

Ujomudike P.O. (2015) Ubuntu Ethics. In: ten Have H. (eds) Encyclopedia of Global Bioethics. Springer. http://link.springer.com/content/pdf/10.1007%2F978-3-319-05544-2_428-1.pdf

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The concept of ‘vulnerability’ in research ethics: an in-depth analysis of policies and guidelines (Dearbhail Bracken-Roche, et al | April 2017)

Abstract

Background The concept of vulnerability has held a central place in research ethics guidance since its introduction in the United States Belmont Report in 1979. It signals mindfulness for researchers and research ethics boards to... More

Abstract

Background The concept of vulnerability has held a central place in research ethics guidance since its introduction in the United States Belmont Report in 1979. It signals mindfulness for researchers and research ethics boards to the possibility that some participants may be at higher risk of harm or wrong. Despite its important intended purpose and widespread use, there is considerable disagreement in the scholarly literature about the meaning and delineation of vulnerability, stemming from a perceived lack of guidance within research ethics standards. The aim of this study was to assess the concept of vulnerability as it is employed in major national and international research ethics policies and guidelines.
Methods We conducted an in-depth analysis of 11 (five national and six international) research ethics policies and guidelines, exploring their discussions of the definition, application, normative justification and implications of vulnerability.
Results Few policies and guidelines explicitly defined vulnerability, instead relying on implicit assumptions and the delineation of vulnerable groups and sources of vulnerability. On the whole, we found considerable richness in the content on vulnerability across policies, but note that this relies heavily on the structure imposed on the data through our analysis.
Conclusions Our results underscore a need for policymakers to revisit the guidance on vulnerability in research ethics, and we propose that a process of stakeholder engagement would well-support this effort.
Keywords: Research ethics, Vulnerable populations, Vulnerability, Research policy, Ethics policy, Research oversight

Bracken-Roche, D., Bell, E., Macdonald, M. E., & Racine, E. (2017). The concept of “vulnerability” in research ethics: an in-depth analysis of policies and guidelines. Health Research Policy and Systems15, 8. http://doi.org/10.1186/s12961-016-0164-6 Publisher (Open Access): https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5297186/

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Identifying and Mitigating Risk of Violence in the Scientific Workplace (Papers: Renée Binder, et al | 2017)

Published/Released on December 01, 2017 | Posted by Admin on February 13, 2018 | Keywords: , , , ,

 Forensic psychiatrists can have an important role in helping to improve safety in the scientific workplace by evaluating the potential for violence and develop- ing strategies to mitigate the risk. Forensic psychiatrists engage in violence risk assessment in both criminal and civil settings.1 In... More

 Forensic psychiatrists can have an important role in helping to improve safety in the scientific workplace by evaluating the potential for violence and develop- ing strategies to mitigate the risk. Forensic psychiatrists engage in violence risk assessment in both criminal and civil settings.1 In fact, core competencies of forensic psychiatry fellowships include being able to opine about risks of reoffending and making decisions about hospitalization and release. In addition, forensic psychiatrists develop skills in protecting their personal safety as they work with potentially dangerous evaluees and work in correctional settings.

[colored_box]In contrast to psychiatrists' experience and expertise, of psychiatrists within the academic setting, scientists rarely, if ever, have the proper skills to identify or mitigate risk in the workplace. There may be a lack of awareness that warning signs occur and often precede violent acts.2 Similarly, non–mental health clinicians are typically not trained in assessing and mitigating risk of violence. . The authors of this article work as Deans and Director of Academic Affairs at a large research university. They are often consulted by leaders, faculty, staff, and trainees about problematic behaviors exhibited in the clinical and scientific workplace. One of the authors (R.B.) is also a forensic psychiatrist and has been able to develop training and consultation for the dean's office about recognizing and mitigating risk. As violence in the scientific workplace receives more attention, forensic psychiatrists should expect to be called on for their expertise on this matter... .

 Binder, R., Garcia, P., Johnson, B. and Fuentes-Afflick, E. (2017). "Identifying and Mitigating Risk of Violence in the Scientific Workplace." Journal of the American Academy of Psychiatry and the Law Online 45(4): 400-403. Publisher (Open Access): http://jaapl.org/content/45/4/400

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Social and Communicative Functions of Informed Consent Forms in East Asia and Beyond (Papers: Go Yoshizawa, et al | 2017)

Abstract The recent research and technology development in medical genomics has raised new issues that are profoundly different from those encountered in traditional clinical research for which informed consent was developed. Global initiatives for international collaboration and public participation in genomics research now face an increasing... More

Abstract The recent research and technology development in medical genomics has raised new issues that are profoundly different from those encountered in traditional clinical research for which informed consent was developed. Global initiatives for international collaboration and public participation in genomics research now face an increasing demand for new forms of informed consent which reflect local contexts. This article analyzes informed consent forms (ICFs) for genomic research formulated by four selected research programs and institutes in East Asia – the Medical Genome Science Program in Japan, Universiti Sains Malaysia Human Research Ethics Committee in Malaysia, and the Taiwan Biobank and the Taipei Medical University- Joint Institutional Review Board in Taiwan. The comparative text analysis highlights East Asian contexts as distinct from other regions by identifying communicative and social functions of consent forms. The communicative functions include re-contact options and offering interactive support for research participants, and setting opportunities for family or community engagement in the consent process. This implies that informed consent cannot be validated solely with the completion of a consent form at the initial stage of the research, and informed consent templates can facilitate interactions between researchers and participants through (even before and after) the research process. The social functions consist of informing participants of possible social risks that include genetic discrimination, sample and data sharing, and highlighting the role of ethics committees. Although international ethics harmonization and the subsequent coordination of consent forms may be necessary to maintain the quality and consistency of consent process for data-intensive international research, it is also worth paying more attention to the local values and different settings that exist where research participants are situated for research in medical genomics. More than simply tools to gain consent from research participants, ICFs function rather as a device of social communication between research communities and civic communities in liaison with intermediary agents like ethics committees, genetic counselors, and public biobanks and databases.

Keywords: medical genomics, consent documents, group consent, family consent, community engagement

Yoshizawa G, Sasongko TH, Ho C-H and Kato K (2017) Social and Communicative Functions of Informed Consent Forms in East Asia and Beyond. Frontiers in Genetics. 8:99. doi: 10.3389/fgene.2017.00099 Publisher (Open Access): http://www.ea.sinica.edu.tw/UploadFile/files/Social%20and%20Communicativ....

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Consent for data on consent (Mollie Gerver | 2015)

Published/Released on December 28, 2014 | Posted by Admin on February 8, 2018 | Keywords: , , ,

[colored_box]There are instances where the provider of an intervention, such as surgery, has failed to obtain necessary informed consent from the recipient of the intervention. Perhaps a surgeon has failed to warn the patient that she may go into a coma, or even be killed, from the surgery. Sometimes,... More

[colored_box]There are instances where the provider of an intervention, such as surgery, has failed to obtain necessary informed consent from the recipient of the intervention. Perhaps a surgeon has failed to warn the patient that she may go into a coma, or even be killed, from the surgery. Sometimes, as a result of this intervention, the recipient cannot give informed consent to researchers for the release of their personal data precisely because of the intervention. If they are in a coma, they cannot be reached. Sometimes, this personal data itself can prove that the provider of the intervention failed to obtain informed consent for the intervention. For example, a personal file may include a consent form that does not include warnings about the risk of falling into a coma from the surgery. Paradoxically, those who cannot give informed consent for the disclosure of their personal data on an intervention may have been especially ill-informed about the repercussions of the intervention. In such instances, should researchers ever use the data and disclose the data in their research? In an attempt to demonstrate when this dilemma may be relevant, and how it may be solved, I will present a real-world case of this dilemma in my own empirical research on refugees who agreed to repatriate to their countries of origin from Israel. I will consider what theories on consent, if any, can help us resolve this dilemma

Gerver, Mollie (2015) Consent for data on consent. Ethical Theory and Moral Practice, 18 (4). pp. 799-816. Publisher: http://eprints.lse.ac.uk/64012/1/__lse.ac.uk_storage...

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Rethinking Informed Consent in Biobanking and Biomedical Research: a Taiwanese Aboriginal Perspective and the Implementation of Group Consultation (Papers: Chih-hsing Ho | 2017)

Published/Released on December 02, 2017 | Posted by Admin on February 1, 2018 | Keywords: , , , , , , , , , , , ,

Abstract The current informed consent mechanism is based mainly on the rationale of individualism, particularly for its emphasis on autonomy and self-determination. However, in biobanking and genetic research, research findings may pose a risk of harm to the collective, quite aside from a particular individual. Under... More

Abstract The current informed consent mechanism is based mainly on the rationale of individualism, particularly for its emphasis on autonomy and self-determination. However, in biobanking and genetic research, research findings may pose a risk of harm to the collective, quite aside from a particular individual. Under this circumstance, individual consent needs to be supplemented by other mechanisms, such as group consent obtained from the relevant group or community. In Taiwan, the inclusion of Taiwanese aborigines in biobanking and genetic research challenges the conventional wisdom of individual consent-taking, which overlooks the significance of collective involvement in decision-making. This paper discusses the rationale of the group consent requirement in Taiwan, which seeks to include Taiwanese aborigines’ perspectives, and the related measures that have been pronounced to implement group consultation. It is further argued that consent procedures should not be transactional in being primarily focused on types of information that is to be communicated. Rather, it should be a process that ensures comprehension, empowerment and trust. Keywords Informed consent, Biobanking, Biomedical research. Group consultation, Taiwanese aborigines, Human Subjects Research Act

Ho, C.-h. (2017). "Rethinking Informed Consent in Biobanking and Biomedical Research: a Taiwanese Aboriginal Perspective and the Implementation of Group Consultation." Asian Bioethics Review 9(4): 353-365. Publisher (Open Access):  https://link.springer.com/article/10.1007/s41649-017-0037-5

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Ethical issues concerning the recruitment of university students as research subjects (Papers: Albert F.G. Leentjens & James L. Levenson | 2013)

Abstract OBJECTIVE: To discuss the ethical issues in the recruitment of university students as research subjects. METHODS: Narrative review and discussion. RESULTS: The recruitment and inclusion of students in university research projects raise ethical issues specific to this population.... More

Abstract OBJECTIVE: To discuss the ethical issues in the recruitment of university students as research subjects. METHODS: Narrative review and discussion. RESULTS: The recruitment and inclusion of students in university research projects raise ethical issues specific to this population. Students may be required or coerced to participate, receive course credits for their participation, and their privacy may be violated. Some ethically questionable procedures are standard practice at some universities, and endorsed by their institutional review boards and faculties. Some changes will not be easy to achieve because this implies a change of organization of research and will affect funding and output. CONCLUSION: The authors call for international standards to be set for research with students, that are in line with applicable standards in research with other subjects, such as medically ill patients, on which researchers, members of institutional review boards and editors can base their policies, opinions and decisions. KEYWORDS: Ethics; Recruitment; University students

Leentjens, A. F., & Levenson, J. L. (2013). Ethical issues concerning the recruitment of university students as research subjects. Journal of psychosomatic research, 75(4), 394‐398. Publisher (Open Access): http://www.jpsychores.com/article/S0022-3999(13)00078-0/fulltext

Also see: The SoTL research ethics resource booklets produced by AHRECs

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Ethical complexities in child co-research (Papers: Merle Spriggs and Lynn Gillam | 2017)

Abstract Child co-research has become popular in social research involving children. This is attributed to the emphasis on children’s rights and is seen as a way to promote children’s agency and voice. It is a way of putting into practice the philosophy, common amongst childhood researchers,... More

Abstract Child co-research has become popular in social research involving children. This is attributed to the emphasis on children’s rights and is seen as a way to promote children’s agency and voice. It is a way of putting into practice the philosophy, common amongst childhood researchers, that children are experts on childhood. In this article, we discuss ethical complexities of involving children as co-researchers, beginning with an analysis of the literature, then drawing on data from interviews with researchers who conduct child co-research. We identify six ethical complexities, some of which are new findings which have not been mentioned before in this context. In light of these possible ethical complexities, a key finding is for researchers to be reflexive – to reflect on how the research may affect child co-researchers and participants before the research starts. A separate overriding message that came out in responses from the researchers we interviewed was the need for support and training for child co-researchers. We conclude by providing a list of questions for reflexive researchers to ask of themselves when they use child co-research methodology. We also provide important questions for human research ethics committees to ask when they review projects using child co-research. Keywords co-researcher, ethics, ethics committees, reflexivity, research ethics, research methodology

Spriggs M. and Gillam L (2017) "Ethical complexities in child co-research." Research Ethics 0(0): 1747016117750207. Publisher: http://journals.sagepub.com/doi/full/10.1177/1747016117750207#articleCitationDownloadContainer

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Considering the ethics of big data research: A case of Twitter and ISIS/ISIL (Elizabeth Buchanan | December 2017)

Published/Released on December 01, 2017 | Posted by Admin on December 28, 2017 | Keywords: , , , , , , , ,

Abstract This is a formal commentary, responding to Matthew Curran Benigni, Kenneth Joseph, and Kathleen Carley’s contribution, “Online extremism and the communities that sustain it: Detecting the ISIS supporting community on Twitter”. This brief review reflects on the ethics of big data research methodologies, and how... More

Abstract This is a formal commentary, responding to Matthew Curran Benigni, Kenneth Joseph, and Kathleen Carley’s contribution, “Online extremism and the communities that sustain it: Detecting the ISIS supporting community on Twitter”. This brief review reflects on the ethics of big data research methodologies, and how novel methods complicate long-standing principles of research ethics. Specifically, the concept of the “data subject” as a corollary, or replacement, of “human subject” is considered.

Citation: Buchanan E (2017) Considering the ethics of big data research: A case of Twitter and ISIS/ISIL. PLoS ONE 12(12): e0187155. https://doi.org/10.1371/journal.pone.0187155 Publisher (Open Access): http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0187155

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Do consultancies compromise academic research and ethics? A case study of Burma/Myanmar (Papers: Ardeth Maung Thawnghmung | April 2017)

ABSTRACT This paper contributes to ongoing debates about interactions between the political science discipline and policymaking communities by analysing the role played by scholars who work as consultants for governments, non-governmental organizations, and international aid agencies in conflict-affected and post-conflict societies. It argues that although consultancies... More

ABSTRACT This paper contributes to ongoing debates about interactions between the political science discipline and policymaking communities by analysing the role played by scholars who work as consultants for governments, non-governmental organizations, and international aid agencies in conflict-affected and post-conflict societies. It argues that although consultancies permit scholars to engage with policy communities and provide convenient access for data collection, they also present methodological constraints and can complicate and compromise research ethics due to the inherent tensions linking the two different realms with their differing norms, agendas, and goals. The findings are based on the author’s decades of field experience in Myanmar, a country which has recently received much attention from the international community, on interviews with nine PhD candidates or PhD holders who have been employed as consultants for aid agencies in Myanmar and Southeast Asia, and analysis of secondary sources on countries with similar situations. KEYWORDS: Consultancy, Qualitative Research Method, Myanmar/Burma, Research Ethics, Policy-making, Transitional Democracies

Thawnghmung AM. (2017). Do consultancies compromise academic research and ethics? A case study of Burma/Myanmar. Asian Journal of Political Science 25(2): 176-193. Publisher: http://www.tandfonline.com/doi/full/10.1080/02185377.2017.1307122 Research Gate: .../publication/316061682_Do_consultancies_compromise_academic_research_and_ethics...

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Ethical issues in Alzheimer’s disease research involving human subjects (Dena S Davis | August 2017)

Published/Released on August 14, 2017 | Posted by Admin on December 12, 2017 | Keywords: , , , , ,

[colored_box]As we aggressively pursue research to cure and prevent Alzheimer's disease, we encounter important ethical challenges. None of these challenges, if handled thoughtfully, would pose insurmountable barriers to research. But if they are ignored, they could slow the research process, alienate potential study subjects and do damage to research... More

[colored_box]As we aggressively pursue research to cure and prevent Alzheimer's disease, we encounter important ethical challenges. None of these challenges, if handled thoughtfully, would pose insurmountable barriers to research. But if they are ignored, they could slow the research process, alienate potential study subjects and do damage to research recruits and others. These challenges are (1) the necessity of very large cohorts of research subjects, recruited for lengthy studies, probably ending only in the subjects' death; (2) the creation of cohorts of 'study ready' volunteers, many of whom will be competent to consent at the beginning of the process, but move into cognitive impairment later; (3) reliance on adaptive trial design, creating challenges for informed consent, equipoise and justice; (4) the use of biomarkers and predictive tests that describe risk rather than certainty, and that can threaten participants' welfare if the information is obtained by insurance companies or long-term care providers; (5) the use of study partners that creates unique risks of harm to the relationship of subject and study partner. We need greater attention, at all levels, to these complex ethical issues. Work on these issues should be included in research plans, from the federal to the local, and should be supported through NIH in the same way that it supported work on the ethical, legal and social implications of genetic research. .

Davis DS Ethical issues in Alzheimer’s disease research involving human subjects Journal of Medical Ethics 2017;43:852-856. Publisher: http://jme.bmj.com/content/43/12/852

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Ethical Covert Research (Papers: Paul Spicker | 2011)

Abstract Covert research is research which is not declared to the research participants or subjects. This is often muddled with deception, and condemned as intrinsically unethical. The basis of that condemnation is a legitimate concern with the rights of research subjects. It is, however, over-generalized. Research... More

Abstract Covert research is research which is not declared to the research participants or subjects. This is often muddled with deception, and condemned as intrinsically unethical. The basis of that condemnation is a legitimate concern with the rights of research subjects. It is, however, over-generalized. Research subjects do have rights, but they are not the only people with rights. They may have some say about the use of information, but not all information is under their control. They are entitled to privacy, but not everything is private. Undeclared, undisclosed research in informal settings has to be accepted as a normal part of academic enquiry.

SPICKER, P., 2011. Ethical covert research. Sociology, 45 (1), pp. 118-133 Publisher: http://dx.doi.org/10.1177/0038038510387195 Research Gate: https://www.researchgate.net/publication/256621378_Ethical_Covert_Research

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University scandal, reputation and governance (Papers: Meredith Downes | 2017)

Published/Released on October 23, 2017 | Posted by Admin on October 29, 2017 | Keywords: , , , , , , , , ,

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Abstract [colored_box]A review of the literature on corporate governance serves to demonstrate the applicability of many governance solutions to the university setting. Based on a review of university scandals, most of which are recent but some of which took place decades ago, it is possible to categorize them as follows: sex scandals, drugs, cheating, hazing, admissions and diplomas, on-the-job consumption, athletics, and murder. Several examples are provided in the paper, along with their impact on various stakeholders. The paper then discusses a variety of solutions designed to either preempt the activities potentially leading to scandal, to deter them or to punish perpetrators. Some of these involve structural changes, institutional policies and procedures, fines, terminations, and sanctions. The paper emphasizes the proactive safeguards which govern and monitor to make sure that universities do not suffer on the back end and that their reputations do not suffer into the future. . Keywords University reputation, University governance, Corporate governance, University scandal, Governance solutions, Governance in higher education

Downes, M (2017) University scandal, reputation and governance. International Journal for Educational Integrity 13(1): 8. Publisher (open access): https://edintegrity.springeropen.com/articles/10.1007/s40979-017-0019-0

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Ethical considerations in the use of student data: International perspectives and educators’ perceptions (Papers: Hazel Jones | 2016)

Published/Released on November 16, 2016 | Posted by Admin on September 27, 2017 | Keywords: , , , , ,

Abstract: As more emphasis is placed on the notion of “Show Me the Learning”, institutions and individual staff are looking to the field of learning analytics to provide evidence of the learning that is happening. There is growing concern within the field that this evidence needs... More

Abstract: As more emphasis is placed on the notion of “Show Me the Learning”, institutions and individual staff are looking to the field of learning analytics to provide evidence of the learning that is happening. There is growing concern within the field that this evidence needs to be collected and utilised in ethical ways. However, there is a disconnect between national and international perspectives of the importance of institutional policy and guidelines regarding ethical use of student data, and the perceptions of academics about these guidelines. Although many universities are adopting such policies, results from a survey of academics suggest that such policy and guidelines are low on the ranking of factors that impact their current use and knowledge of learning analytics. Practical strategies are suggested to promote policy and guidelines, with appropriate support mechanisms that enable staff to embrace and adopt learning analytics through efficient, sustainable, and accessible processes. Keywords: Ethical use of data, learning and teaching culture, learning analytics, PESTER plan, student data

Jones, H. (2016). Ethical considerations in the use of student data: International perspectives and educators’ perceptions. In S. Barker, S. Dawson, A. Pardo, & C. Colvin (Eds.), Show Me The Learning. Proceedings ASCILITE 2016 Adelaide (pp. 300-304). http://2016conference.ascilite.org/wp-content/uploads/ascilite2016_jonesh_concise.pdf

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Improving the process of research ethics review (Papers: Stacey A. Page and Jeffrey Nyeboer | 2017)

Abstract Background Research Ethics Boards, or Institutional Review Boards, protect the safety and welfare of human research participants. These bodies are responsible for providing an independent evaluation of proposed research studies, ultimately ensuring that the research does not proceed unless standards and regulations... More

Abstract Background Research Ethics Boards, or Institutional Review Boards, protect the safety and welfare of human research participants. These bodies are responsible for providing an independent evaluation of proposed research studies, ultimately ensuring that the research does not proceed unless standards and regulations are met. Main body Concurrent with the growing volume of human participant research, the workload and responsibilities of Research Ethics Boards (REBs) have continued to increase. Dissatisfaction with the review process, particularly the time interval from submission to decision, is common within the research community, but there has been little systematic effort to examine REB processes that may contribute to inefficiencies. We offer a model illustrating REB workflow, stakeholders, and accountabilities. Conclusion Better understanding of the components of the research ethics review will allow performance targets to be set, problems identified, and solutions developed, ultimately improving the process. Keywords Research ethics, Research Ethics Boards, Research Ethics Committees, Medical research, Applied ethics, Institutional Review Boards

Page SA and Nyeboer J (2017) Improving the process of research ethics review Research Integrity and Peer Review 2(1) 14. Publisher (Open access): https://researchintegrityjournal.biomedcentral.com/articles/10.1186/s41073-017-0038-7

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Human Research Ethics and social media

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Disaster ethics: issues for researchers and participants (Papers: Dónal O’Mathúna | 2017)

Disaster responders need evidence to help guide their decisions as they plan for and implement responses. The need for evidence creates an ethical imperative to conduct some research on and in disasters. Some of that research involves human participants and raises another ethical imperative to protect participants. This presentation... More

Disaster responders need evidence to help guide their decisions as they plan for and implement responses. The need for evidence creates an ethical imperative to conduct some research on and in disasters. Some of that research involves human participants and raises another ethical imperative to protect participants. This presentation will provide an overview of some ethical challenges arising in balancing the dual imperatives in disaster research: to produce high-quality research findings and to engage with participants ethically and respectfully. Such issues have been highlighted by the inclusion of disaster research within the 2016 revision of the Council for International Organizations of Medical Sciences (CIOMS) ethics guidelines for health-related research involving humans. [colored_box]Debate exists over whether disaster research ethics is particularly unique. Regardless, the confluence of challenging ethical issues and the multiple vulnerabilities to which participants are exposed has the potential to create a perfect ethical storm. These issues will be examined through the lens of one set of benchmarks for ethical research in low-income settings, with examples from intervention research and qualitative research in humanitarian crises. Disaster research challenges current approaches to research ethics approval procedures. The current weight of research ethics An argument will be presented that research ethics is currently unbalanced with its focus on ethical approval and needs to refocus on facilitating ethical research. Virtue ethics for researchers needs to be developed because in the field, all that researchers may have to rely on are their conscience, virtues and personal integrity. .

Dónal O’Mathúna is Associate Professor of ethics at Dublin City University, Ireland and at The Ohio State University, USA. He is the Director of the Center for Disaster & Humanitarian Ethics (http://www.ge2p2.org/new-blog/) and was Chair of the EU-funded COST Action on Disaster Bioethics, 2012-2016 (http://disasterbioethics.eu/). He has written and presented widely on disaster ethics, including a recent comment in The Lancet (DOI: 10.1016/S0140-6736(17)31276-X). .

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Values in China as Compared to Africa: Two Conceptions of Harmony

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Ethical by Design: Ethics Best Practices for Natural Language Processing (Papers: Jochen L. Leidner and Vassilis Plachouras | 2017)

Published/Released on April 04, 2017 | Posted by Admin on July 18, 2017 | Keywords: , , , ,

Abstract Natural Language Processing (NLP) systems analyze and/or generate human language, typically on users’ behalf. One natural and necessary question that needs to be addressed in this context, both in research projects and in production settings, is the question how ethical the work is, both regarding... More

Abstract Natural Language Processing (NLP) systems analyze and/or generate human language, typically on users’ behalf. One natural and necessary question that needs to be addressed in this context, both in research projects and in production settings, is the question how ethical the work is, both regarding the process and its outcome. [colored_box]Towards this end, we articulate a set of issues, propose a set of best practices, notably a process featuring an ethics review board, and sketch how they could be meaningfully applied. Our main argument is that ethical outcomes ought to be achieved by design, i.e. by following a process aligned by ethical values. We also offer some response options for those facing ethics issues. . While a number of previous works exist that discuss ethical issues, in particular around big data and machine learning, to the authors’ knowledge this is the first account of NLP and ethics from the perspective of a principled process. .

Jochen L. Leidner and Vassilis Plachouras (2017) Ethical by Design: Ethics Best Practices for Natural Language Processing. Proceedings of the First Workshop on Ethics in Natural Language Processing, pages 8–18, Valencia, Spain, April 4th, 2017. http://www.ethicsinnlp.org/workshop/pdf/EthNLP02.pdf

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Integrating the Management of Personal Data Protection and Open Science with Research Ethics (Papers: David Lewis, et al | 2017)

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Ethical Research Protocols for Social Media Health Research (Papers: Adrian Benton, et al | 2017)

Abstract Social media have transformed datadriven research in political science, the social sciences, health, and medicine. Since health research often touches on sensitive topics that relate to ethics of treatment and patient privacy, similar ethical considerations should be acknowledged when using social media data in health research. While much has... More

Abstract Social media have transformed datadriven research in political science, the social sciences, health, and medicine. Since health research often touches on sensitive topics that relate to ethics of treatment and patient privacy, similar ethical considerations should be acknowledged when using social media data in health research. While much has been said regarding the ethical considerations of social media research, health research leads to an additional set of concerns. We provide practical suggestions in the form of guidelines for researchers working with social media data in health research. These guidelines can inform an IRB proposal for researchers new to social media health research.

Benton A, Coppersmith G & Dredze M (2017) Ethical Research Protocols for Social Media Health Research. Proceedings of the First Workshop on Ethics in Natural Language Processing, pages 94–102, Valencia, Spain, April 4th, 2017. Publisher: http://www.ethicsinnlp.org/workshop/pdf/EthNLP12.pdf

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Expert perspectives on ethics review of international data-intensive research: Working towards mutual recognition (Papers: Edward S Dove & Chiara Garattini | June 2017)

Abstract Life sciences research is increasingly international and data-intensive. Researchers work in multi-jurisdictional teams or formally established research consortia to exchange data and conduct research using computation of multiple sources and volumes of data at multiple sites and through multiple pathways. Despite the internationalization and data... More

Abstract Life sciences research is increasingly international and data-intensive. Researchers work in multi-jurisdictional teams or formally established research consortia to exchange data and conduct research using computation of multiple sources and volumes of data at multiple sites and through multiple pathways. Despite the internationalization and data intensification of research, the same ethics review process as applies to single-site studies in one country tends to apply to multi-site studies in multiple countries. Because of the standard requirement for multi-jurisdictional or multi-site ethics review, international research projects are subjected to multiple ethics reviews of the same research protocol. Consequently, the reviews may be redundant and resource-consuming, whilst the opinions delivered by ethics committees may be inconsistent both within and across jurisdictions. In this article, we present findings based on interviews conducted with international experts in research ethics on the topic of ethics review mutual recognition. We explore the issues associated with ethics committee review of multi-jurisdictional data-intensive research projects, identifying current problems, real-life experiences, and potential solutions that are both bottom-up (via researchers, participants and publics) and top-down (via statutory regulation), as well as challenges in achieving both. On the whole, participants recommended multiple changes to the current ethics review regime for data-intensive international research with the aim of reducing inefficiency and inconsistency. But, the changes recommended differ in terms of degree and scope. In general, participants stressed that key drivers of success in a reformed system should be strong leadership (on the ground and in government) and demonstration of value. Keywords data-intensive research, ethics review, international research, mutual recognition, research ethics, research ethics committees

Dove ES and Garattini C (2017) Expert perspectives on ethics review of international data-intensive research: Working towards mutual recognition. Research Ethics. doi: 10.1177/1747016117711972 Publisher (Open access): http://journals.sagepub.com/eprint/rhVadgBXY4dsbnU7jkqX/full

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Research Ethics and New Forms of Data for Social and Economic Research

[colored_box]This report sets out some basic rules that underpin an ethical approach to research using new forms of data for social and economic research. These rules and the interpretation that we place upon them give rise to a set of recommendations designed to provide a framework for the ethical... More

[colored_box]This report sets out some basic rules that underpin an ethical approach to research using new forms of data for social and economic research. These rules and the interpretation that we place upon them give rise to a set of recommendations designed to provide a framework for the ethical governance of research using such data. There are assumptions and limitations underpinning these recommendations – they are not cost-free and will be easier to apply in countries with established research ethics procedures, particularly where research organisations and data owners have access to ethical review bodies. The sharing of expertise on, and knowledge about, research ethics between countries is critical to the creation of a common and cost-efficient ethical environment for social scientific research. .

OECD (2016), “Research Ethics and New Forms of Data for Social and Economic Research”, OECD Science, Technology and Industry Policy Papers, No. 34, OECD Publishing, Paris. http://dx.doi.org/10.1787/5jln7vnpxs32-en

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The Complex and Multifaceted Aspects of Conflicts of Interest (Papers: William W. Stead, MD | May 2017)

Judgment and integrity are 2 hallmarks of professionalism. Conflict of interest (COI), bias, and dishonesty represent a spectrum of threats to judgment and integrity. [colored_box]COI, a conflict between a professional responsibility and a personal interest, is at one end of this threat spectrum. COI creates a risk of bias. Bias,... More

Judgment and integrity are 2 hallmarks of professionalism. Conflict of interest (COI), bias, and dishonesty represent a spectrum of threats to judgment and integrity. [colored_box]COI, a conflict between a professional responsibility and a personal interest, is at one end of this threat spectrum. COI creates a risk of bias. Bias, a prejudice for or against something, is in the middle of this spectrum. If a COI results in bias, the bias may affect a professional judgment. Dishonesty is deceit or fraud. Dishonesty is at the opposite end of this spectrum from COI. Each of these threats exists on a continuum. COI may be present or perceived. Bias may be conscious or unconscious. Dishonesty may be intentional or unintentional. . Every professional has COIs. The conflicts may be internal (eg, personal interest in reputation or career advancement) or external (eg, a financial interest in a for-profit business). Few professionals are intentionally dishonest. Recognition that each physician has COIs and that COIs and dishonesty are at different ends of the spectrum is the first step in a thoughtful conversation about how to protect professional judgment and integrity. .

Stead WW. The Complex and Multifaceted Aspects of Conflicts of Interest. JAMA. 2017;317(17):1765-1767. doi:10.1001/jama.2017.3435 http://jamanetwork.com/journals/jama/fullarticle/2623588

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Ethical Imperialism’ and the Export of Research Ethics Regulation from the Global North to South Africa (Papers: Mark Israel | May 2017)

Abstract The global export of principlism forms part of broader international flows of capital, students and academics, as well as knowledge and ideology. The impact of global capital has had a long-standing effect on research ethics governance. Pharmaceutical companies have sought to open up new markets... More

Abstract The global export of principlism forms part of broader international flows of capital, students and academics, as well as knowledge and ideology. The impact of global capital has had a long-standing effect on research ethics governance. Pharmaceutical companies have sought to open up new markets and take advantage of cheaper sites for multi-centre drug trials. Multinational research teams have looked to those countries with lower risks of litigation, low labour costs, pharmacologically ‘naive’ participants, weak ethics review and the absence of other regulatory processes. As a result, research in low- and middleincome countries has burgeoned. As developing countries struggle to keep pace, the Helsinki and UNESCO Declarations have created regulatory templates for those without the infrastructure to create their own, and a range of capacity-building initiatives in research ethics have encouraged researchers in many developing countries to follow these models. Increasing student and academic mobility and international research collaboration between the global North and South may also ease international transfer of a range of research and education policies that favour universalist approaches to research ethics. Contemporary regulations in countries such as South Africa have shadowed developments in the North and have extended biomedical regulation to all forms of research. However, in some parts of the global South and the Fourth World, there is an emerging distrust and a critique of the motivation for some of the funding for capacitybuilding in research ethics. For many, opposition to universalist claims is not simply targeted at insensitivity in application but draws on critical ethical traditions such as indigenous, postmodern and postcolonial ethics to challenge the universal basis for principlism, and calls for a deeper understanding of and engagement with how different societies, cultures, peoples and disciplines understand ethics, research and ethical research.

Israel, M (2017) ‘Ethical Imperialism’ and the Export of Research Ethics Regulation from the Global North to South Africa. AFSAAP Annual Conference Proceedings – Africa: Moving the Boundaries. ISBN 978-0-9942689-2-1. http://afsaap.org.au/assets/15-Mark-Israel.pdf

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Codes of Ethics for Economists: A Pluralist View (Papers: Sheila C Dow | 2013)

Published/Released on April 15, 2013 | Posted by Admin on May 22, 2017 | Keywords: , , , , , , , , ,

Abstract Within the discussion of ethics and economics some have considered designing a code of ethics for economists. But the idea of such a code is potentially problematic from a pluralist standpoint. Some possibilities are discussed here to show that any code concerning the behaviour of... More

Abstract Within the discussion of ethics and economics some have considered designing a code of ethics for economists. But the idea of such a code is potentially problematic from a pluralist standpoint. Some possibilities are discussed here to show that any code concerning the behaviour of economists presumes a particular view of human nature and thus of professionalism. Further, issues of socio-economic power in the profession pose problems for the interpretation and implementation of some possible principles, notably those referring to standards of competence and truth-seeking. It is therefore concluded that any code of ethics should take the form of general guidelines, with primacy given to the  ethics of pluralism: tolerance, even-handedness and open-mindedness, on which the interpretation of all other ethical considerations rests. Keywords: Code of ethics, epistemology, pluralism

Dow S (2013) Codes of Ethics for Economists: A Pluralist View, Economic Thought, 2 (1), pp. 20-29. Publisher  (open access): http://et.worldeconomicsassociation.org/papers/codes-of-ethics-for-economists-a-pluralist-view/

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The hexamethonium asthma study and the death of a normal volunteer in research (Papers: Julian Savulescu & Merle Spriggs | July 2001)

On July 19, after investigating the death of a previously healthy volunteer, the United States Office for Human Research Protections (OHRP) suspended nearly all federally funded medical research involving human subjects at Johns Hopkins University. The death has been described as “particularly disturbing” because 24 year old Ellen Roche... More

On July 19, after investigating the death of a previously healthy volunteer, the United States Office for Human Research Protections (OHRP) suspended nearly all federally funded medical research involving human subjects at Johns Hopkins University. The death has been described as “particularly disturbing” because 24 year old Ellen Roche was a healthy volunteer who had nothing to gain by taking part in the study.1 Her death has revived debate about the adequacy of oversight of medical research that followed the death of 18 year old Jesse Gelsinger who volunteered for a gene therapy experiment.

Savulescu J, Spriggs M (2002) The hexamethonium asthma study and the death of a normal volunteer in research. Journal of Medical Ethics. 28:3-4. Publisher (Open Access): http://jme.bmj.com/content/28/1/3

Also read 2001 New York Times story

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Controversies Surrounding Laud Humphreys’ Tearoom Trade: An Unsettling Example of Politics and Power in Methodological Critiques (Papers: Michael Lenza | 2004)

Published/Released on March 01, 2004 | Posted by Admin on May 20, 2017 | Keywords: , , , , , , , , , , , ,

Abstract: Argues that Humphrey’s tearoom trade study, misinforms readers as much as it informs, regarding moral and ethical foundations for research with human subjects. States that Humphrey’s tearoom study made significant positive contributions to the population he studied. Concludes that few studies in sociology have accomplished... More

Abstract: Argues that Humphrey’s tearoom trade study, misinforms readers as much as it informs, regarding moral and ethical foundations for research with human subjects. States that Humphrey’s tearoom study made significant positive contributions to the population he studied. Concludes that few studies in sociology have accomplished as much in a single work. Keywords: Political theory, Homosexuality, Sociology

Lenza M, (2004) Controversies surrounding Laud Humphreys’ tearoom trade: an unsettling example of politics and power in methodological critiques. International Journal of Sociology and Social Policy 24(3/4/5) pp.20-31 doi: 10.1108/01443330410790858 Publisher: http://www.emeraldinsight.com/doi/abs/10.1108/01443330410790858

Tearoom Trade on Google Books

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First, Do No Harm: The US Sexually Transmitted Disease Experiments in Guatemala (Papers: Michael Rodriguez and Robert García | 2013)

Abstract [colored_box]Beginning in 1946, the United States government immorally and unethically—and, arguably, illegally—engaged in research experiments in which more than 5000 uninformed and unconsenting Guatemalan people were intentionally infected with bacteria that cause sexually transmitted diseases. Many have been left untreated to the present day. More

Abstract [colored_box]Beginning in 1946, the United States government immorally and unethically—and, arguably, illegally—engaged in research experiments in which more than 5000 uninformed and unconsenting Guatemalan people were intentionally infected with bacteria that cause sexually transmitted diseases. Many have been left untreated to the present day. . Although US President Barack Obama apologized in 2010, and although the US Presidential Commission for the Study of Bioethical Issues found the Guatemalan experiments morally wrong, little if anything has been done to compensate the victims and their families. . We explore the backdrop for this unethical medical research and violation of human rights and call for steps the United States should take to provide relief and compensation to Guatemala and its people. .

Rodriguez MA, & García R. (2013). First, Do No Harm: The US Sexually Transmitted Disease Experiments in Guatemala. American Journal of Public Health, 103(12), 2122–2126. http://doi.org/10.2105/AJPH.2013.301520 Publisher (open access): https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3828982/ .

Also read 2014 paper by Barry Lyons 2015 video recording of a lecture by Daniel Sulmasy Link to 2011 Presidential Commission report (PDF)

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Laying the Groundwork: A Practical Guide for Ethical Research with Indigenous Communities (Papers: Julia K. Riddell, et al)

Abstract Although there are numerous ethical guidelines for research with Indigenous communities, not all research is conducted in an ethical, culturally respectful, and effective way. To address this gap, we review four ethical frameworks for research with Indigenous Peoples in Canada. Drawing upon our experiences conducting... More

Abstract Although there are numerous ethical guidelines for research with Indigenous communities, not all research is conducted in an ethical, culturally respectful, and effective way. To address this gap, we review four ethical frameworks for research with Indigenous Peoples in Canada. Drawing upon our experiences conducting a transformative social justice research project in five Indigenous communities, we discuss the ethical tensions we have encountered and how we have attempted to address these challenges. Finally, drawing on these experiences, we make recommendations to support those planning to conduct research with Indigenous Peoples in Canada. We discuss the importance of training to highlight the intricacies and nuances of bringing the ethical guidelines to life through co-created research with Indigenous communities. Keywords research ethics, Indigenous communities, community-based research Acknowledgments We are deeply grateful to our partner communities who have walked beside us on our research journey.

Riddell JK, Salamanca A, Pepler DJ, Cardinal S, McIvor O (2017). Laying the Groundwork: A Practical Guide for Ethical Research with Indigenous Communities. The International Indigenous Policy Journal, 8(2) . Retrieved from: http://ir.lib.uwo.ca/iipj/ vol8/iss2/6 DOI: 10.18584/iipj.2017.8.2.6 Publisher: http://ir.lib.uwo.ca/cgi/viewcontent.cgi?article=1332&context=iipj

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More a marathon than a hurdle: towards children’s informed consent in a study on safety (Papers: Tim P More, et al)

Published/Released on May 02, 2017 | Posted by Admin on May 9, 2017 | Keywords: , , , , , ,

Abstract Informed consent is critical in research with children. Although much has been written about the need to see consent as an ongoing process, less has considered how to do it in practice. This article reflects on the authors’ experiences of conducting a piece of research... More

Abstract Informed consent is critical in research with children. Although much has been written about the need to see consent as an ongoing process, less has considered how to do it in practice. This article reflects on the authors’ experiences of conducting a piece of research focusing on children’s experiences of safety from abuse within institutional contexts. It draws on feedback provided by participants and the guidance of three Children’s Reference Groups. The importance of presenting information in accessible and appropriate ways, of providing opportunities for participants to negotiate their participation and for in-the-moment challenges be dealt with collaboratively and reflexively are stressed. To illustrate our approach, we provide a number of consent tools and describe how they were utilised.

Moore TP, McArthur M & Noble-Carr D (2017) More a marathon than a hurdle: towards children’s informed consent in a study on safety. Qualitative Research. doi: 10.1177/1468794117700708 Publisher: http://journals.sagepub.com/doi/abs/10.1177/1468794117700708

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Social sciences lose out again in Common Rule reform (Papers: Robert Dingwall | 2017)

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Abstract The Common Rule's incoherent approach to ethics regulation will change little in the way institutional review boards and researchers interact, says Robert Dingwall.

Dingwall R (2017) Social Sciences Lose out Again in Common Rule Reform. Nature Human Behaviour 1 (April 7, 2017): 83, doi:10.1038/s41562–017–0083. Publisher: https://www.nature.com/articles/s41562-017-0083

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Time to publication for publicly funded clinical trials in Australia: an observational study (Papers: Linn Beate Strand, et al | 2017)

Published/Released on March 01, 2017 | Posted by Admin on April 16, 2017 | Keywords: , , , , , , , ,

Abstract Objective To examine the length of time between receiving funding and publishing the protocol and main paper for randomised controlled trials. Design An observational study using survival analysis. Setting Publicly funded health and medical research in Australia. More

Abstract Objective To examine the length of time between receiving funding and publishing the protocol and main paper for randomised controlled trials. Design An observational study using survival analysis. Setting Publicly funded health and medical research in Australia. Participants Randomised controlled trials funded by the National Health and Medical Research Council of Australia between 2008 and 2010. Main outcome measures Time from funding to the protocol paper and main results paper. Multiple variable survival models examining whether study characteristics predicted publication times. Results We found 77 studies with a total funding of $A59 million. The median time to publication of the protocol paper was 6.4 years after funding (95% CI 4.1 to 8.1). The proportion with a published protocol paper 8 years after funding was 0.61 (95% CI 0.48 to 0.74). The median time to publication of the main results paper was 7.1 years after funding (95% CI 6.3 to 7.6). The proportion with a published main results paper 8 years after funding was 0.72 (95% CI 0.56 to 0.87). The HRs for how study characteristics might influence timing were generally close to one with narrow CIs, the notable exception was that a longer study length lengthened the time to the main paper (HR=0.62 per extra study year, 95% CI 0.43 to 0.89). Conclusions Despite the widespread registration of clinical trials, there remain serious concerns of trial results not being published or being published with a long delay. We have found that these same concerns apply to protocol papers, which should be publishable soon after funding. Funding agencies could set a target of publishing the protocol paper within 18 months of funding.

Strand LB, Clarke P, Graves N, et al Time to publication for publicly funded clinical trials in Australia: an observational study. BMJ Open 2017;7:e012212. doi: 10.1136/bmjopen-2016-012212 Publisher (open access): http://bmjopen.bmj.com/content/7/3/e012212.info

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Why Research Oversight Bodies Should Interview Research Subjects (Papers: Carl Elliott | 2017)

[colored_box]Abstract Research oversight bodies conducting for-cause investigations often fail to interview research subjects who have complaints of mistreatment. I argue that this failure is a mistake for three reasons. First, because written medical records are often inaccurate, there may be no entries in a study subject’s... More

[colored_box]Abstract Research oversight bodies conducting for-cause investigations often fail to interview research subjects who have complaints of mistreatment. I argue that this failure is a mistake for three reasons. First, because written medical records are often inaccurate, there may be no entries in a study subject’s record about research-related medical harms. Second, research staff members write the reports that make up the research study records. If there are allegations that a research subject experienced research harms, subjects will rightly feel it is unfair that the for-cause investigation relies only on records written and kept by the research team. Third, the outcome of a for-cause investigation may be influenced by the ethical distance that results from failure to learn directly from research subjects about their complaints of mistreatment. . Keywords: Research subjects, human experimentation, human research subject protections, research ethics, research oversight, for-cause investigations .

Elliott C (2017) Why Research Oversight Bodies Should Interview Research Subjects. IRB: Ethics & Human Research. March-April 2017 39(2) Publisher: http://www.thehastingscenter.org/irb_article/research-oversight-bodies-interview-research-subjects/

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Responsibilities in international research: a new look revisited (Papers: Solomon R Benatar & Peter A Singer | 2010)

Following promulgation of the Nuremberg code in 1947, the ethics of research on human subjects has been a challenging and often contentious topic of debate. Escalation in the use of research participants in low-income countries over recent decades (stimulated by the HIV pandemic and the need to carry out... More

Following promulgation of the Nuremberg code in 1947, the ethics of research on human subjects has been a challenging and often contentious topic of debate. Escalation in the use of research participants in low-income countries over recent decades (stimulated by the HIV pandemic and the need to carry out clinical trials expeditiously on large numbers of patients), has intensified the debate on the ethics of international research and led to increasing attention both to exploitation of vulnerable subjects and to considerations of how the 10:90 gap in health and medical research (ie, 90% of resources being spent on 10% of the problems) could be narrowed. In 2000, prompted by the discussions over several years that led to the US NIH launching a capacity building programme on research ethics for members of research ethics committees in developing countries, we advanced a ‘new look’ for the ethics of international research.1 Since then progress has been made on several fronts. First, our ideas—considered somewhat radical and impractical at the time—have been provocatively addressed by scholars who have either contested them or advanced similar conceptions of what obligations international researchers have to research participants and communities in low income countries before, during and after clinical trials. Second, those researchers who have been sympathetic to our ideas have either endeavoured to put these into practice or have investigated the feasibility of doing so. Third, the intractability of the 10/90 gap and the escalation of interest in global health have sensitised many to the need to amplify the uptake of these ideas in practice...

Benatar SR, Singer PA (2010). Responsibilities in international research: a new look revisited. Journal of Medical Ethics 36(4) pp:194-197 Publisher: (Open Access here) http://jme.bmj.com/content/36/4/194.full

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To research (or not) that is the question: ethical issues in research when medical care is disrupted by political action: a case study from Eldoret, Kenya (Papers: Darlene R House, et al | 2016)

Abstract While considerable attention has been focused on understanding the myriad of ethical analysis in international research in low and middle income countries, new issues always arise that have not been anticipated in guidelines or studied extensively. The disruption of medical care arising as a direct... More

Abstract While considerable attention has been focused on understanding the myriad of ethical analysis in international research in low and middle income countries, new issues always arise that have not been anticipated in guidelines or studied extensively. The disruption of medical care arising as a direct result of political actions, including strikes, postelection violence and related activities, is one such issue that leaves physician-researchers struggling to manage often conflicting professional responsibilities. This paper discusses the ethical conflicts that arise for physician-researchers, particularly when disruption threatens the completion of a study or completion is possible but at the expense of not addressing unmet medical needs of patients. We review three pragmatic strategies and the ethical issues arising from each: not starting research, stopping research that has already started, and continuing research already initiated. We argue that during episodes of medical care disruption, research that has been started can be continued only if the ethical standards imposed at the beginning of the study can continue to be met; however, studies that have been approved but not yet started should not begin until the disruption has ended and ethical standards can again be assured.

House, D.R., Marete, I., Meslin, E.M. (2016) To research (or not) that is the question: ethical issues in research when medical care is disrupted by political action: a case study from Eldoret, Kenya. Journal of Medical Ethics. 42(1) pp:61–65 http://dx.doi.org/10.1136/medethics-2013-101490

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Using Social Media as a Research Recruitment Tool: Ethical Issues and Recommendations (Papers: Luke Gelinas, et al | 2017)

Abstract The use of social media as a recruitment tool for research with humans is increasing, and likely to continue to grow. Despite this, to date there has been no specific regulatory guidance and there has been little in the bioethics literature to guide investigators and... More

Abstract The use of social media as a recruitment tool for research with humans is increasing, and likely to continue to grow. Despite this, to date there has been no specific regulatory guidance and there has been little in the bioethics literature to guide investigators and institutional review boards (IRBs) faced with navigating the ethical issues such use raises. We begin to fill this gap by first defending a nonexceptionalist methodology for assessing social media recruitment; second, examining respect for privacy and investigator transparency as key norms governing social media recruitment; and, finally, analyzing three relatively novel aspects of social media recruitment: (i) the ethical significance of compliance with website “terms of use”; (ii) the ethics of recruiting from the online networks of research participants; and (iii) the ethical implications of online communication from and between participants. Two checklists aimed at guiding investigators and IRBs through the ethical issues are included as appendices. Keywords: ethics, privacy, recruitment, research, social media, transparency

Gelinas L, Pierce R, Winkler S, Cohen G, Fernandez H, and Bierer L&B (2017) Using Social Media as a Research Recruitment Tool: Ethical Issues and Recommendations, The American Journal of Bioethics, 17(3), pp3-14, DOI: 10.1080/15265161.2016.1276644 Publisher: http://dx.doi.org/10.1080/15265161.2016.1276644

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Reactively, Proactively, Implicitly, Explicitly? Academics’ Pedagogical Conceptions of how to Promote Research Ethics and Integrity (Papers: Heidi Hyytinen & Erika Löfström | 2017)

Abstract This article focuses on academics’ conceptions of teaching research ethics and integrity. Seventeen academics from a Finnish research intensive university participated in this qualitative study. The data were collected using a qualitative multi-method approach, including think-aloud and interview data. The material was scrutinized using thematic... More

Abstract This article focuses on academics’ conceptions of teaching research ethics and integrity. Seventeen academics from a Finnish research intensive university participated in this qualitative study. The data were collected using a qualitative multi-method approach, including think-aloud and interview data. The material was scrutinized using thematic analysis, with both deductive and inductive approaches. The results revealed variation in academics’ views on the responsibility for teaching research integrity, the methods employed to teach it and the necessity of intervening when misconduct occurs. The academics emphasized the responsibility of the individual teacher and the student to foster integrity as well as the shared responsibility of all members of the academic community. However, many academics felt that they themselves needed pedagogical training. Most shared the view that practices of responsible conduct in research can be explicitly and intentionally taught through demonstration, explanation, and practice. However, the academics also noted that learning research integrity and ethics takes place implicitly. A few questioned the need for and the utility of training in the form of courses or through an explicitly addressed topic included in, for instance, methods courses. Their views on the question of how to deal with alleged cases of misconduct varied. While many academics considered a proactive approach the best way to prevent misconduct, some trusted more in a reactive approach. The results show that, while in general academics agree on the importance of research ethics, their conceptions of teaching it vary. The teaching conception bears consequences for the teaching methods chosen, assignment of responsibility for both teaching and students learning, and for the way in which teachers believe that misconduct should be responded to. Keywords Research ethics, Research integrity, Ethics training, Preventing misconduct, Teaching conceptions

Hyytinen, H. & Löfström, E. (2017) Reactively, Proactively, Implicitly, Explicitly? Academics’ Pedagogical Conceptions of how to Promote Research Ethics and Integrity. Journal of Academic Ethics  15(1) 23-41. doi:10.1007/s10805-016-9271-9 Publisher: https://link.springer.com/article/10.1007/s10805-016-9271-9?no-access=true

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Traditional and Electronic Informed Consent for Biobanking: A Survey of U.S. Biobanks (Papers: Simon Christian, et al 2014)

Published/Released on December 15, 2014 | Posted by Admin on March 5, 2017 | Keywords: , , , , , , , , ,

Abstract: Biobanks face unique challenges obtaining consent from biospecimen contributors. Electronic consent (e-consent) presents one option for streamlining the biobank consent process, and improving contributor understanding of consent information. An e-mail survey was conducted to establish the extent of current biobank e-consent and interest in future... More

Abstract: Biobanks face unique challenges obtaining consent from biospecimen contributors. Electronic consent (e-consent) presents one option for streamlining the biobank consent process, and improving contributor understanding of consent information. An e-mail survey was conducted to establish the extent of current biobank e-consent and interest in future use of e-consent. A total of 235 biobanks were surveyed and 65 (28%) responded with a fully completed survey. Few of these 65 biobanks (8%) reported using e-consent; however, the majority (75%) were interested in e-consent. Many (48%) biobanks were in discussions with institutional stakeholders about using e-consent in the future. Anticipated benefits of e-consent included improved efficiency and increased enrollment. Perceived barriers to e-consent adoption included lack of funding, issues with human subjects approval, and factors affecting user uptake (e.g., computer literacy). Biobanks using e-consent reported cost, technology issues, and difficulty training staff as barriers to e-consent adoption. Traditional consenting methods (e.g., face-to-face, phone, and mail) continued to be used at biobanks reporting use of e-consent. The survey results suggest strong interest in e-consent among U.S. biobanks, and a need to consider a range of implementation issues, including user preferences and receptivity; institutional and technical support; integration with clinical data networks; electronic signature capture; and what type of e-consent to implement. Biobanks will need evidence-based guidance for purposes of addressing these issues, so that e-consent processes enhance efficiency, as well as contributor receptivity, understanding, and trust.

Simon Christian M, Klein David W, and Schartz Helen A (2014) Biopreservation and Biobanking. December 2014, 12(6): 423-429. doi:10.1089/bio.2014.0045 Publisher: http://online.liebertpub.com/doi/abs/10.1089/bio.2014.0045

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The Role of Intuition in Risk/Benefit Decision-Making in Human Subjects Research (Papers: David B. Resnik | June 2016)

ABSTRACT One of the key principles of ethical research involving human subjects is that the risks of research to should be acceptable in relation to expected benefits. Institutional review board (IRB) members often rely on intuition to make risk/benefit decisions concerning proposed human studies. Some have... More

ABSTRACT One of the key principles of ethical research involving human subjects is that the risks of research to should be acceptable in relation to expected benefits. Institutional review board (IRB) members often rely on intuition to make risk/benefit decisions concerning proposed human studies. Some have objected to using intuition to make these decisions because intuition is unreliable and biased and lacks transparency. In this article, I examine the role of intuition in IRB risk/benefit decision-making and argue that there are practical and philosophical limits to our ability to reduce our reliance on intuition in this process. The fact that IRB risk/benefit decision-making involves intuition need not imply that it is hopelessly subjective or biased, however, since there are strategies that IRBs can employ to improve their decisions, such as using empirical data to estimate the probability of potential harms and benefits, developing classification systems to guide the evaluation of harms and benefits, and engaging in moral reasoning concerning the acceptability of risks. KEYWORDS: Benefits, human subjects research, institutional review boards, intuition, reasoning, risks

Resnik DB (2016) The Role of Intuition in Risk/Benefit Decision-Making in Human Subjects Research. Accountability in Research Policies and Quality Assurance 24(1) Publisher: http://www.tandfonline.com/doi/abs/10.1080/08989621.2016.1198978

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Silence: Everyday Betrayals of Research Participants – PLOS Blogs (Hilda Bastian | December 2016)

Published/Released on December 22, 2016 | Posted by Admin on January 12, 2017 | Keywords: , , , ,

[colored_box]"Cancer patients at holistic centre are more likely to die" Headline, The Times, London, September 1990. . Many of them were watching the evening TV news on the BBC, with no idea of the blow... More

[colored_box]"Cancer patients at holistic centre are more likely to die" Headline, The Times, London, September 1990. . Many of them were watching the evening TV news on the BBC, with no idea of the blow that was about to hit. They were cancer patients at a center in Bristol, and participating in a study. The researchers had reported in the Lancet that the patients were 3 times as likely to have their cancer return, and twice as likely to die. There was a press release and a press conference – but no communication with the participants. Liz Hunt interviewed some of them: . Isla Bourke, one of the women in the study, remembers wandering around the BBC newsroom where she worked in a daze. “Everyone knew I had gone to Bristol, they were looking at me, wondering what I had done to myself. I felt so terrible”. . Vicky Harris, another of the study cases, was travelling home on the tube when she caught a glimpse of the headlines in someone’s evening newspaper. She learned that she was twice as likely to die of breast cancer just because she had been to Bristol. “I actually wondered whether I would make it home”, she recalled. .

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National and International Compliance Tools (Papers: Pamela Andanda, et al 2016)

Creating and enhancing TRUSTworthy, responsible and equitable partnerships in international research A report for TRUST

Executive Summary The main challenge in the governance of research at the global level is the existence of varying ethics review practices across... More

Creating and enhancing TRUSTworthy, responsible and equitable partnerships in international research A report for TRUST

Executive Summary The main challenge in the governance of research at the global level is the existence of varying ethics review practices across countries. While differences in approaches per se do not necessarily create a problem, such varying practices can lead to “ethics dumping”; the purposeful exploitation of third country research participants/resources, as well as exploitation based on insufficient ethics awareness. The TRUST project develops three tools to counter ethics dumping:

1. A Global Code of Conduct for North‐South Collaboration

2. A Fair Research Contracts Webtool, and

3. A Compliance and Ethics Follow‐up Tool.

This report provides the first step towards the Compliance and Ethics Follow‐up Tool. It was produced based on the following activities. The resource developed which covers the first two activities can be found on pages 18‐32, structured according to the Horizon 2020 ethics review template. An overview of self‐regulatory mechanisms operated by 13 pharmaceutical companies, as presented in their public sources, can be found on pages 33‐44. An overview of existing compliance tools can be found on pages 45‐54.

Andanda P, Wathuta J, Leisinger K and Schroeder D, a report for TRUST http://trust-project.eu/wp-content/uploads/2016/10/TRUST-664771-National-and-International-Compliance-Tools-Final.pdf

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The risk of re-identification versus the need to identify individuals in rare disease research (Papers: Mats G Hansson, et al | 2016)

Abstract There is a growing concern in the ethics literature and among policy makers that de-identification or coding of personal data and biospecimens is not sufficient for protecting research subjects from privacy invasions and possible breaches of confidentiality due to the possibility of unauthorized re-identification. At... More

Abstract There is a growing concern in the ethics literature and among policy makers that de-identification or coding of personal data and biospecimens is not sufficient for protecting research subjects from privacy invasions and possible breaches of confidentiality due to the possibility of unauthorized re-identification. At the same time, there is a need in medical science to be able to identify individual patients. In particular for rare disease research there is a special and well-documented need for research collaboration so that data and biosamples from multiple independent studies can be shared across borders. In this article, we identify the needs and arguments related to de-identification and re-identification of patients and research subjects and suggest how the different needs may be balanced within a framework of using unique encrypted identifiers.

Hansson MG, Lochmüller H, Riess O, Schaefer F, Orth M, Rubinstein Y, Molster C, Dawkins H, Taruscio D, Posada M and Woods S (2016) The risk of re-identification versus the need to identify individuals in rare disease research. European Journal of Human Genetics 24, 1553–1558; doi:10.1038/ejhg.2016.52 Publisher (open access): http://www.nature.com/ejhg/journal/v24/n11/full/ejhg201652a.html

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Generic Risks of Exporting Non-Ethical Practices

Executive Summary The potential to be exploited is part of the human condition. Even superheroes usually have an Achilles’ heel, or vulnerability. Take for instance, Superman, whose vulnerability is kryptonite. Exploiters take advantage of others’ vulnerabilities to promote their... More

Executive Summary The potential to be exploited is part of the human condition. Even superheroes usually have an Achilles’ heel, or vulnerability. Take for instance, Superman, whose vulnerability is kryptonite. Exploiters take advantage of others’ vulnerabilities to promote their own interests. Whilst there is a morally neutral sense of exploitation (the exploitation of natural talents to create art, for example), the term is generally used to describe a moral failing. Exploiting others is morally wrong. This report is about the risks for exploitation for defined entities, in other words, ‘Achilles’ heels’ in research. What makes exploitation more likely to occur due to vulnerabilities that can be exploited, either knowingly or unknowingly? After careful analysis of the relevant literature and case studies, as well as consultation withleading ethics committee chairs and representatives of vulnerable populations from low and middle income countries (LMICs), an exploitation risk table was produced. Risks were categorized according to the points at which vulnerability occurred, and were grouped according to four values which have to be present to avoid exploitation in North-South collaborations: fairness, respect, care and honesty. Trustworthiness is achieved when all four values are realized.

Kate Chatfield, Doris Schroeder, Klaus Leisinger, Jaci van Niekerk, Ngayo Munuo, Rachel Wynberg and Paul Woodgate (2016) Generic Risks of Exporting Non-Ethical Practices, a report for TRUST http://trust-project.eu/wp-content/uploads/2016/12/TRUST-Deliverable-Generic-Risks-Final-copy.pdf

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The high costs of getting ethical and site-specific approvals for multi-centre research (Papers: Adrian G. Barnett, et al | 2016)

Published/Released on December 07, 2016 | Posted by Admin on December 22, 2016 | Keywords: , , , , , , , , , ,

Abstract Background Multi-centre studies generally cost more than single-centre studies because of larger sample sizes and the need for multiple ethical approvals. Multi-centre studies include clinical trials, clinical quality registries, observational studies and implementation studies. We examined the costs of two large Australian multi-centre studies in obtaining... More

Abstract Background Multi-centre studies generally cost more than single-centre studies because of larger sample sizes and the need for multiple ethical approvals. Multi-centre studies include clinical trials, clinical quality registries, observational studies and implementation studies. We examined the costs of two large Australian multi-centre studies in obtaining ethical and site-specific approvals. Methods We collected data on staff time spent on approvals and expressed the overall cost as a percent of the total budget. Results The total costs of gaining approval were 38 % of the budget for a study of 50 centres (mean cost AUD $6960 per site) and 2 % for a study of 11 centres (mean cost AUD $2300 per site). Seventy-five and 90 % of time was spent on repeated tasks, respectively, and many time-consuming tasks, such as reformatting documents, did nothing to improve the study design or participant safety. Conclusions Improvements have been made to the ethical approval application system, but more gains could be made without increasing risks of harm to research participants. We propose that ethical review bodies and individual sites publish statistics on how long they take to process approvals which could then be nationally benchmarked. Keywords Research ethics Ethical review Multi-centre study Australia

Barnett A, Campbell M, Shield C, Farrington A, Hall L, Page K, Gardner A, Mitchell B, Graves N (2016) The high costs of getting ethical and site-specific approvals for multi-centre research. Research Integrity and Peer Review. 1(16) Publisher (Open Access): http://researchintegrityjournal.biomedcentral.com/articles/10.1186/s41073-016-0023-6#Abs1

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Caring for Data: Law, Professional Codes and the Negotiation of Confidentiality in Australian Criminological Research. Report for the Criminology Research Council (Australia) (Papers: Robert Chalmers and Mark Israel | 2005

Summary In this report, we offer guidance to criminologists attempting to navigate, and manage the impact of, laws that relate to the protection and disclosure of confidential and personal information that they gather in the course of their research. We start by providing examples of the impact... More

Summary In this report, we offer guidance to criminologists attempting to navigate, and manage the impact of, laws that relate to the protection and disclosure of confidential and personal information that they gather in the course of their research. We start by providing examples of the impact of relevant laws on the practice of criminologists to set this work in it proper context, and then provide a general overview of laws relating to issues such as privacy, confidentiality and compelled disclosure. Drawing on this background, Section Three provides brief responses to Frequently Asked Questions covering the ways researchers gather, store, use, disclose and reuse information. We conclude by examining possible future developments. Throughout the report we attempt to illustrate how the practice of criminological research practically intersects with relevant laws. This intersection can be painful as relevant laws are by no means tailored to suit the environment of such research. However, our aim is to help criminologists and their institutions reach better informed decisions about management of legal risks although, of course, this report is not a substitute for specific advice.

Chalmers, R & Israel, M (2005) Caring for Data: Law, Professional Codes and the Negotiation of Confidentiality in Australian Criminological Research. Report for the Criminology Research Council (Australia). 57 pages. http://crg.aic.gov.au/reports/200304-09.pdf

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Toward a New Era of Trust and Transparency in Clinical Trials (Papers: Kathy L. Hudson et al | October 2016)

Clinical trials are the most publicly visible component of the biomedical research enterprise, from the potential human application of novel laboratory findings to the generation of robust evidence about treatments or preventive interventions in routine clinical care. These trials are also the point at which biomedical research most directly... More

Clinical trials are the most publicly visible component of the biomedical research enterprise, from the potential human application of novel laboratory findings to the generation of robust evidence about treatments or preventive interventions in routine clinical care. These trials are also the point at which biomedical research most directly engages human participants—dedicated volunteers who trust investigators to uphold the highest standards of scientific rigor and ethical oversight. While clinical trials have evolved and improved over time—producing impressive advances in diagnosis, treatment, and prevention—there are still major challenges. Therefore, fundamental changes are needed to reflect science and society’s movement to increase efficiency, accountability, and transparency in clinical research.

Hudson KL, Lauer MS, Collins FS. Toward a New Era of Trust and Transparency in Clinical Trials. JAMA. 2016;316(13):1353-1354. doi:10.1001/jama.2016.14668 Publisher: http://jamanetwork.com/journals/jama/article-abstract/2553888

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An Argument for Fewer Clinical Trials (Papers: Kirstin Borgerson 2016)

Abstract The volume of clinical research is increasing exponentially—far beyond our ability to process and absorb the results. Given this situation, it may be beneficial to consider reducing the flow at its source. In what follows, I will motivate and critically evaluate the following proposal: researchers... More

Abstract The volume of clinical research is increasing exponentially—far beyond our ability to process and absorb the results. Given this situation, it may be beneficial to consider reducing the flow at its source. In what follows, I will motivate and critically evaluate the following proposal: researchers should conduct fewer clinical trials. More specifically, I consider whether researchers should be permitted to conduct only clinical research of very high quality and, in turn, whether research ethics committees (RECs) should prohibit all other, lower-quality research, even when it might appear to meet some minimal ethical standard. Following a close analysis of the social-value requirement of ethical clinical research, I argue that this proposal is defensible. The problem identified in this paper has two parts, quantity and quality, and some clarification is needed about the latter because “quality” is a highly contested term in the medical literature. When some scholars advocate for high-quality trials, they mean large-scale, simple, explanatory randomized controlled trials. Others, including myself, have defended a different characterization of high-quality research that tends more toward pragmatic trial design and the use of methods other than RCTs. Pragmatic trials aim to provide evidence that directly supports clinical decision-making in “usual” care settings. Unlike explanatory trials, which aim to abstract away from particular settings and patients, in the hopes of creating ideal conditions for the success of an intervention, pragmatic trials deliberately pursue knowledge of high applicability, through the use of representative subjects, clinically important questions, flexible treatment protocols, patient-oriented outcome measures, and so on. I see applicability as a marker of high-quality research. The context in which research is meant to be applied should be the context in which new interventions are evaluated.

Borgerson K (2016) “An Argument for Fewer Clinical Trials,” Hastings Center Report 46 1–11. DOI: 10.1002/hast.637 Publisher: http://onlinelibrary.wiley.com/doi/10.1002/hast.637/full

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Ethics and Emotions: A Migrant Researcher Doing Research Among Romanian Migrants (Papers: Oana Romocea | 2014)

Abstract This article explores both the ethical and emotional issues that emerge while conducting qualitative research as a Romanian migrant researcher among Romanian migrants settled in the UK. I specifically look at the transformative role played by emotions in the research process and how knowledge is generated by... More

Abstract This article explores both the ethical and emotional issues that emerge while conducting qualitative research as a Romanian migrant researcher among Romanian migrants settled in the UK. I specifically look at the transformative role played by emotions in the research process and how knowledge is generated by a permanent state of 'objective reflexivity' employed by the researcher and self-reflexivity on the part of the participants. While most emotions and ethical considerations transpire mainly from the interaction and the relationship established between the researcher and the participants, I highlight other aspects of fieldwork which also carry ethical decisions and emotional implications, even though not so evident at first sight. These include the relation between the researcher and the topic of the research, the terminology used, the language choice during the interview, and any potential legal aspects. I conclude that juggling both ethics and emotions does not compromise the scientific standard of the research, but rather adds a new dimension to doing research in one's own social context. Keywords: Qualitative Research, Emotions, Ethics, Migration, Romania

Romocea O (2014) Ethics and Emotions: A Migrant Researcher Doing Research Among Romanian Migrants. Sociological Research Online. 19(4), 16 DOI: 10.5153/sro.3489 Publisher: http://www.socresonline.org.uk/19/4/16.html Research Gate: https://www.researchgate.net/publication/286731277_Ethics_and_emotions_A_migr...

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Trust, Access and Sensitive Boundaries Between ‘Public’ and ‘Private’: A Returning Insider’s Experience of Research in Bulgaria (Papers: Milena I. Kremakova, 2014)

Abstract The article argues that social researchers need a critical, locally situated and historically informed understanding of the categories of 'public' and 'private', in particular when carrying out research in post-socialist Eastern Europe. Drawing on an ethnographic study of the working lives of Bulgarian maritime workers, the article... More

Abstract The article argues that social researchers need a critical, locally situated and historically informed understanding of the categories of 'public' and 'private', in particular when carrying out research in post-socialist Eastern Europe. Drawing on an ethnographic study of the working lives of Bulgarian maritime workers, the article discusses a range of ethical fieldwork dilemmas encountered while negotiating field access, maintaining relations with gatekeepers, recruiting participants, establishing rapport, interviewing, gaining access to documentary evidence and exiting the field. The analysis focuses on the conceptual and practical boundaries between the 'public' and the 'private' and highlights the entanglement of the public and private spheres. The notion of 'returning insider' is developed and the implications of the returning insider's positionality are discussed in Bulgarian post-socialist context. Keywords: Bulgaria, Eastern Europe, Ethnography, Maritime Labour, Post-Socialist, Research Ethics, 'returning Insider'

Kremakova MI  (2014) Trust, Access and Sensitive Boundaries Between 'Public' and 'Private': A Returning Insider's Experience of Research in Bulgaria. Sociological Research Online, 19(4). Article number 12. ISSN 1360-7804 Publisher: http://www.socresonline.org.uk/19/4/12.html

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Seeking consent for research with indigenous communities: a systematic review (Papers: Emily F. M. Fitzpatrick, et al 2016)

Abstract Background When conducting research with Indigenous populations consent should be sought from both individual participants and the local community. We aimed to search and summarise the literature about methods for seeking consent for research with Indigenous populations. Methods A systematic literature search was conducted for articles that describe... More

Abstract Background When conducting research with Indigenous populations consent should be sought from both individual participants and the local community. We aimed to search and summarise the literature about methods for seeking consent for research with Indigenous populations. Methods A systematic literature search was conducted for articles that describe or evaluate the process of seeking informed consent for research with Indigenous participants. Guidelines for ethical research and for seeking consent with Indigenous people are also included in our review. [colored_box]Results Of 1447 articles found 1391 were excluded (duplicates, irrelevant, not in English); 56 were relevant and included. Articles were categorised into original research that evaluated the consent process (n = 5) or publications detailing the process of seeking consent (n = 13) and guidelines for ethical research (n = 38). Guidelines were categorised into international (n = 8); national (n = 20) and state/regional/local guidelines (n = 10). In five studies based in Australia, Canada and The United States of America the consent process with Indigenous people was objectively evaluated. In 13 other studies interpreters, voice recording, videos, pictures, flipcharts and “plain language” forms were used to assist in seeking consent but these processes were not evaluated. Some Indigenous organisations provide examples of community-designed resources for seeking consent and describe methods of community engagement, but none are evaluated. International, national and local ethical guidelines stress the importance of upholding Indigenous values but fail to specify methods for engaging communities or obtaining individual consent. In the ‘Grey literature’ concerns about the consent process are identified but no solutions are offered. Conclusion Consultation with Indigenous communities is needed to determine how consent should be sought from the community and the individual, and how to evaluate this process. Keywords Ethics Informed consent Research Indigenous Aboriginal Oceanic ancestry group

Fitzpatrick EFM, Martiniuk ALC, D’Antoine H, Oscar J, Carter M and Elliott EJ (2016) Seeking consent for research with indigenous communities: a systematic review. BMC Medical Ethics 17:65 DOI 10.1186/s12910-016-0139-8 (Publisher open access): http://bmcmedethics.biomedcentral.com/articles/10.1186/s12910-016-0139-8

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Research Ethics, Trauma and Self-care: reflections on disaster geographies (Papers: Christine Eriksen 2016)

ABSTRACT In this Research Note, I reflect on researcher trauma in the discipline of geography, and explore ways to build a framework for researcher self-care by facilitating conversations about mental health in collaboration with Human Research Ethics Committees, Professional and Organisational Development Services and Workplace Health and Safety... More

ABSTRACT In this Research Note, I reflect on researcher trauma in the discipline of geography, and explore ways to build a framework for researcher self-care by facilitating conversations about mental health in collaboration with Human Research Ethics Committees, Professional and Organisational Development Services and Workplace Health and Safety units. KEYWORDS: Researcher self-care, human research ethics, trauma, workplace health and safety, disaster, Australia,

Eriksen C (2016) Research Ethics, Trauma and Self-care: reflections on disaster geographies. Australian Geographer. 0(0) pp1-6 Publisher: http://www.tandfonline.com/doi/full/10.1080/00049182.2016.1230001 Academia: https://www.academia.edu/28583965/Research_Ethics_Trauma_and_Self...

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Ethical Requirements and Responsibilities in Video Methodologies: Considering Confidentiality and Representation in Social Justice Research (Papers: Steph M. Anderson and Carolina Muñoz Proto 2016)

Abstract In recent years, psychologists have begun to use video more frequently in qualitative research, in particular, within research on social justice. The non-confidential nature inherent in video, however, raises new ethical challenges for the field of psychology to address. Building upon a growing literature on video-based research,... More

Abstract In recent years, psychologists have begun to use video more frequently in qualitative research, in particular, within research on social justice. The non-confidential nature inherent in video, however, raises new ethical challenges for the field of psychology to address. Building upon a growing literature on video-based research, in this article, we use an illustrative case study to examine how researchers' sense of ethical responsibility can find guidance from, clash against, or fill gaps left by extant federal and disciplinary ethical requirements. We focus specifically on issues of confidentiality and representation, highlighting the challenges and possibilities that video creates in relation to participants' power, dignity, and participation and arguing that psychologists must systematically engage questions about ethical responsibilities throughout the design and implementation phases of a research project. In doing so, psychologists, their community partners, and students will be better able to articulate and problematize their assumptions and intentions regarding video work.

Anderson SM and Muñoz CP (2016) Ethical Requirements and Responsibilities in Video Methodologies: Considering Confidentiality and Representation in Social Justice Research. Social and Personality Psychology Compass. 10(7) pp377-389 DOI 10.1111/spc3.12259 Publisher: http://onlinelibrary.wiley.com/doi/10.1111/spc3.12259/abstract Research Gate: https://www.researchgate.net/publication/304821606_Ethical_Requirements... Academia: https://www.academia.edu/28516816/Ethical_Requirements...

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Reporting of Adverse Events in Published and Unpublished Studies of Health Care Interventions: A Systematic Review (Papers: Su Golder, et al 2016)

Published/Released on September 20, 2016 | Posted by Admin on October 20, 2016 | Keywords: , , , , , , , ,

Abstract Background We performed a systematic review to assess whether we can quantify the underreporting of adverse events (AEs) in the published medical literature documenting the results of clinical trials as compared with other nonpublished sources, and whether we can measure the impact this underreporting has on systematic reviews... More

Abstract Background We performed a systematic review to assess whether we can quantify the underreporting of adverse events (AEs) in the published medical literature documenting the results of clinical trials as compared with other nonpublished sources, and whether we can measure the impact this underreporting has on systematic reviews of adverse events. Methods and Findings Studies were identified from 15 databases (including MEDLINE and Embase) and by handsearching, reference checking, internet searches, and contacting experts. The last database searches were conducted in July 2016. There were 28 methodological evaluations that met the inclusion criteria. Of these, 9 studies compared the proportion of trials reporting adverse events by publication status. The median percentage of published documents with adverse events information was 46% compared to 95% in the corresponding unpublished documents. There was a similar pattern with unmatched studies, for which 43% of published studies contained adverse events information compared to 83% of unpublished studies. A total of 11 studies compared the numbers of adverse events in matched published and unpublished documents. The percentage of adverse events that would have been missed had each analysis relied only on the published versions varied between 43% and 100%, with a median of 64%. Within these 11 studies, 24 comparisons of named adverse events such as death, suicide, or respiratory adverse events were undertaken. In 18 of the 24 comparisons, the number of named adverse events was higher in unpublished than published documents. Additionally, 2 other studies demonstrated that there are substantially more types of adverse events reported in matched unpublished than published documents. There were 20 meta-analyses that reported the odds ratios (ORs) and/or risk ratios (RRs) for adverse events with and without unpublished data. Inclusion of unpublished data increased the precision of the pooled estimates (narrower 95% confidence intervals) in 15 of the 20 pooled analyses, but did not markedly change the direction or statistical significance of the risk in most cases. The main limitations of this review are that the included case examples represent only a small number amongst thousands of meta-analyses of harms and that the included studies may suffer from publication bias, whereby substantial differences between published and unpublished data are more likely to be published. Conclusions There is strong evidence that much of the information on adverse events remains unpublished and that the number and range of adverse events is higher in unpublished than in published versions of the same study. The inclusion of unpublished data can also reduce the imprecision of pooled effect estimates during meta-analysis of adverse events.

Golder S, Loke YK, Wright K, Norman G (2016) Reporting of Adverse Events in Published and Unpublished Studies of Health Care Interventions: A Systematic Review. PLoS Med 13(9): e1002127. doi: 10.1371/journal.pmed.1002127 Publisher (Open access): http://journals.plos.org/plosmedicine/article?id=10.1371/journal.pmed.1002127

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Edge walking ethics (Papers: Rochelle Stewart-Withers September 2016)

Abstract: Edge walkers are thought to be people who walk between worlds, building bridges between different worldviews. Applying this concept to ethics review, when one is both a researcher and committee member, edge work provides a window for sight and a bridge for crossing between the review committee... More

Abstract: Edge walkers are thought to be people who walk between worlds, building bridges between different worldviews. Applying this concept to ethics review, when one is both a researcher and committee member, edge work provides a window for sight and a bridge for crossing between the review committee and the academy, students and supervisors, as well as researchers and research participants. In this article I draw on examples from teaching, research and chairing an ethics committee to highlight some of the ways that I have personally had the opportunity to use my edge walking skills. I use examples to also show how the discipline I belong to Development Studies is in many ways an edge walking discipline. By demystifying various processes and engaging in knowledge exchange, stronger relationships between academics and ethics review are being built. This idea of ethics as means and end is being reinforced.

Stewart-Withers R (2016) Edge walking ethics. New Zealand Sociology, 31(4) pp28-42. Publisher: https://search.informit.com.au/documentSummary;dn=339360749751193;res=IELNZC

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What does organizational diversity in New Zealand tertiary sector research ethics committees teach us about balancing consultative and governance approaches to ethics review? (Papers: Helen Gremillion, et al 2016)

Abstract: This article compares and contrasts the operational practices of ten tertiary research ethics committees in New Zealand, with an in-depth focus on five of these committees, contributing to an identified goal in the literature of rendering more visible the workings of such committees in order to... More

Abstract: This article compares and contrasts the operational practices of ten tertiary research ethics committees in New Zealand, with an in-depth focus on five of these committees, contributing to an identified goal in the literature of rendering more visible the workings of such committees in order to promote applicant engagement. The authors expand upon a study by Tolich et al. (2015), which collected brief narratives from members of five committees and found that the ways committees are run vary quite significantly. In this article five additional narratives are considered, and all ten are compared, with particular consideration given to review processes for applications, and applicants' levels of access to committee members and committee deliberations. We focus on the different ways that variously constrained institutions navigate the tension between ethical decision-making as regulatory activity, and researcher participation and engagement in this decision-making process. The reality and value of institutionally-specific operational practices is confirmed, and simultaneously, potential 'best practice' options that could be applied more broadly are explored. The article proposes questions for future research that emerge from suggestive patterns and points of contrast in the narratives.

Gremillion H, Snell D, Crosthwaite J, Finch B, Paterson J and Tavinor G (2016) What does organizational diversity in New Zealand tertiary sector research ethics committees teach us about balancing consultative and governance approaches to ethics review? New Zealand Sociology 31(4), pp4-27. Publisher: https://search.informit.com.au/documentSummary;dn=339248951923644;res=IELHSS

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Mothering and ‘insider’ Dilemmas: Feminist Sociologists in the Research Process (Papers: Linda Cooper & Chrissie Rogers 2015)

Abstract This paper is about care, insider positions and mothering within feminist research. We ask questions about how honest, ethical and caring can we really be in placing the self into the research process as mothers ourselves. Should we leave out aspects of the research that do not fit neatly... More

Abstract This paper is about care, insider positions and mothering within feminist research. We ask questions about how honest, ethical and caring can we really be in placing the self into the research process as mothers ourselves. Should we leave out aspects of the research that do not fit neatly and how ethical can we claim to be if we do? Moreover, should difficult differences, secrets and silences that emerge from the research process and research stories that might 'out' us as failures be excluded from research outcomes so as to claim legitimate research? We consider the use of a feminist methods as crucial in the reciprocal and relational understanding of personal enquiry. Mothers invest significant emotional capital in their families and we explore the blurring of the interpersonal and intrapersonal when sharing mothering experiences common to both participant and researcher. Indeed participants can identify themselves within the process as 'friends' of the researcher. We both have familiarity within our respective research that has led to mutual understanding of having insider positions. Crucially individuals' realities are a vital component of the qualitative paradigm and that 'insider' research remains a necessary, albeit messy vehicle in social research. As it is we consider a growing body of literature which marks out and endorses a feminist ethics of care. All of which critique established ways of thinking about ethics, morality, security, citizenship and care. It provides alternatives in mapping private and public aspects of social life as it operates at a theoretical level, but importantly for this paper also at the level of practical application. Keywords: Education, Feminism, Insider, Care Ethics, Mothering, Reflexivity

Cooper L and Rogers C (2015) Mothering and 'insider' Dilemmas: Feminist Sociologists in the Research Process. Sociological Research Online. 20(2)5 http://www.socresonline.org.uk/20/2/5.html Research Gate: https://www.researchgate.net/publication/283022470_Mothering_and_'insider'...

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Positionality and Ethics in the Qualitative Research of Migrants’ Homes (Papers: Anna Pechurina 2014)

Abstract This article discusses ethical decisions in the qualitative research of homes, with particular focus on a situation, in which a researcher studies his/her own migrant community. While exploring more common topics, such as negotiating access and receiving permission to photograph within participants' homes, this article will also highlight issues... More

Abstract This article discusses ethical decisions in the qualitative research of homes, with particular focus on a situation, in which a researcher studies his/her own migrant community. While exploring more common topics, such as negotiating access and receiving permission to photograph within participants' homes, this article will also highlight issues that occur specifically within community-based ethnographic studies among Russian migrants. Using examples from the study of Russian immigrants' homes in the UK, this article raises important questions of social positioning and power distribution within studied community. It will demonstrate the complexities of ethical decision making at different stages of the research process, which reflects the constantly changing relationship(s) between the cultural and social backgrounds and identities of researchers and participants. The insider and outsider role of the researcher is relative and the constant need to balance it, while simultaneously creating difficult ethical dilemmas, often reveals rich data and moves the whole research process forward. Keywords: Research Ethics, Positionality, Ethnography, Russian Migration, Home Studies, Visual Research

Pechurina A (2014) Positionality and Ethics in the Qualitative Research of Migrants’ Homes. Sociological Research Online. 19(1)4 http://www.socresonline.org.uk/19/1/4.html Research Gate: https://www.researchgate.net/publication/271155221_Positionality_and_Ethics_in_the...

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A narrative account of ethics committees and their codes (Papers: Martin Tolich September 2016)

Abstract: This article is based on an invited speech given at Massey University in August 2016 where Tolich revealed the inspiration for his 25-year sociological analysis of research ethics committees and their codes. The title of the talk "sociologically, do we need ethics committees?" began exploring the... More

Abstract: This article is based on an invited speech given at Massey University in August 2016 where Tolich revealed the inspiration for his 25-year sociological analysis of research ethics committees and their codes. The title of the talk "sociologically, do we need ethics committees?" began exploring the stigma ethics committee applicants experience when their qualitative research design does not meet the ethics committee's biomedical expectations at issue. In 1992 this disjuncture provoked Tolich's sociological imagination to engage a literature where he found his private troubles were for other sociologists' public issues, as if these other qualitative researchers collectively experienced a similar stigma. The article reports on Tolich's attempts to resolve power imbalances between researchers and ethics committees by creating an experimental ethics committees and resources that support the ethics of social science researchers. The second half of the article critiques the codes ethics committees' use finding they contain little understanding of qualitative research with the potential to harm research participants. The article ends contrasting the impoverishment of New Zealand's ethics codes with those in Australia, and especially in Canada asking why doesn't New Zealand have an equivalent National Statement?

Tolich M (2016) A narrative account of ethics committees and their codes. New Zealand Sociology, 31(4) pp43-55. Publisher: https://search.informit.com.au/documentSummary;dn=339416648664968;res=IELNZC

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Ethical Regulation and Visual Methods: Making Visual Research Impossible or Developing Good Practice? (Papers: Rose Wiles et al 2012)

Abstract The ethical regulation of social research in the UK has been steadily increasing over the last decade or so and comprises a form of audit to which all researchers in Higher Education are subject. Concerns have been raised by social researchers using visual methods that such ethical scrutiny and... More

Abstract The ethical regulation of social research in the UK has been steadily increasing over the last decade or so and comprises a form of audit to which all researchers in Higher Education are subject. Concerns have been raised by social researchers using visual methods that such ethical scrutiny and regulation will place severe limitations on visual research developments and practice. This paper draws on a qualitative study of social researchers using visual methods in the UK. The study explored their views, the challenges they face and the practices they adopt in relation to processes of ethical review. Researchers reflected on the variety of strategies they adopted for managing the ethical approval process in relation to visual research. For some this meant explicitly 'making the case' for undertaking visual research, notwithstanding the ethical challenges, while for others it involved 'normalising' visual methods in ways which delimited the possible ethical dilemmas of visual approaches. Researchers only rarely identified significant barriers to conducting visual research from ethical approval processes, though skilful negotiation and actively managing the system was often required. Nevertheless, the climate of increasing ethical regulation is identified as having a potential detrimental effect on visual research practice and development, in some instances leading to subtle but significant self-censorship in the dissemination of findings. Keywords: Visual Research; Visual Methods; Ethics Committees; Ethical Regulation; Research Governance; Qualitative Methods

Wiles R, Coffey A, Robison J and Prosser J (2012) Ethical Regulation and Visual Methods: Making Visual Research Impossible or Developing Good Practice? Sociological Research Online. 17(1)8 http://www.socresonline.org.uk/17/1/8.html Research Gate: https://www.researchgate.net/publication/227599406_Ethical_Regulation_and_Visual...

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Bad Apples, Bad Cases, and Bad Barrels: Meta-Analytic Evidence About Sources of Unethical Decisions at Work (Papers: Jennifer J. Kish-Gephart et al 2010)

Published/Released on January 04, 2010 | Posted by Admin on September 30, 2016 | Keywords: , , , , , , ,

Abstract As corporate scandals proliferate, practitioners and researchers alike need a cumulative, quantitative understanding of the antecedents associated with unethical decisions in organizations. In this meta-analysis, the authors draw from over 30 years of research and multiple literatures to examine individual ("bad apple"), moral issue ("bad case"), and organizational environment... More

Abstract As corporate scandals proliferate, practitioners and researchers alike need a cumulative, quantitative understanding of the antecedents associated with unethical decisions in organizations. In this meta-analysis, the authors draw from over 30 years of research and multiple literatures to examine individual ("bad apple"), moral issue ("bad case"), and organizational environment ("bad barrel") antecedents of unethical choice. Findings provide empirical support for several foundational theories and paint a clearer picture of relationships characterized by mixed results. Structural equation modeling revealed the complexity (multidetermined nature) of unethical choice, as well as a need for research that simultaneously examines different sets of antecedents. Moderator analyses unexpectedly uncovered better prediction of unethical behavior than of intention for several variables. This suggests a need to more strongly consider a new "ethical impulse" perspective in addition to the traditional "ethical calculus" perspective. Results serve as a data-based foundation and guide for future theoretical and empirical development in the domain of behavioral ethics.

Kish-Gephart JJ, Harrison DA, Treviño L (2010) Bad Apples, Bad Cases, and Bad Barrels: Meta-Analytic Evidence About Sources of Unethical Decisions at Work. Journal of Applied Psychology 95(4) pp1-31 DOI: 10.1037/a0017103 Research Gate: https://www.researchgate.net/publication/41087509_Bad_Apples_Bad_Cases... Publisher: http://psycnet.apa.org/?&fa=main.doiLanding&doi=10.1037/a0017103

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Problems with ethical approval and how to fix them: lessons from three trials in rheumatoid arthritis (Papers: Jonathan Mendel, et al September 2016)

Jonathan Mendel and colleagues call for greater transparency on ethics committee decisions to improve trial design Clinical trials are subject to costly and onerous regulation that aims to ensure they are well designed, with risks to participants minimised wherever possible, and any serious outstanding risks communicated clearly to participants. We set out to assess how well current regulatory frameworks meet these aims, and the extent to which the relevant regulatory documentation can be accessed for independent scrutiny, using three recent trials of interventions for rheumatoid arthritis. A recent study reported that over 10 000 people with rheumatoid arthritis have been randomised to control groups receiving ineffective treatment in trials of biological disease modifying antirheumatic drugs, risking “irreversible deterioration in condition.”1 We investigated the process of ethical approval, an­d the information given to patients, for two trials of ocrelizumab included in this study (STAGE2 and FEATURE3). We also reviewed documents for a homeopathy... More

Jonathan Mendel and colleagues call for greater transparency on ethics committee decisions to improve trial design Clinical trials are subject to costly and onerous regulation that aims to ensure they are well designed, with risks to participants minimised wherever possible, and any serious outstanding risks communicated clearly to participants. We set out to assess how well current regulatory frameworks meet these aims, and the extent to which the relevant regulatory documentation can be accessed for independent scrutiny, using three recent trials of interventions for rheumatoid arthritis. A recent study reported that over 10 000 people with rheumatoid arthritis have been randomised to control groups receiving ineffective treatment in trials of biological disease modifying antirheumatic drugs, risking “irreversible deterioration in condition.”1 We investigated the process of ethical approval, an­d the information given to patients, for two trials of ocrelizumab included in this study (STAGE2 and FEATURE3). We also reviewed documents for a homeopathy trial in rheumatoid arthritis because problems with ethical approval and informed consent in complementary and alternative medicine have been reported.4 Rheumatoid arthritis is a common disease for which many new therapies have been developed over the past two decades; it is therefore ideal for exploring these issues, which are relevant to clinical trials in all areas of medicine...

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Indian Journal of Medical Ethics (IJME)

ijme"In 1992, eight doctors known for their eminence in ethical practice and concern for the public health system established a panel on the platform of Forum for Medical Ethics (FME) and contested the Maharashtra Medical Council (MMC) elections. By sending out... More

ijme"In 1992, eight doctors known for their eminence in ethical practice and concern for the public health system established a panel on the platform of Forum for Medical Ethics (FME) and contested the Maharashtra Medical Council (MMC) elections. By sending out a letter to all doctors in Maharashtra and by using the media for creating public awareness on the role and responsibilities of the Medical Councils, the FME strove to bring the implementation of medical ethics to the centre of the debate in the election. The FME ensured that votes for the members of its panel were voluntarily sent through mail by each voter on his/her own in the postal ballot system used for the elections at that time. The group also witnessed massive rigging of the elections by the candidate-doctors supported by money power and politics. The electoral malpractices were documented in detail by the group, and presented to the Mumbai High Court in a PIL and also communicated widely through the first newsletter, entitled “Medical Ethics”, published in August 1993. Medical Ethics found wider support from the profession and the public, and was brought out every three months and gradually expanded its scope. When it applied for registration as a journal with the Registrar of Newspapers, New Delhi, it was provided a new title, and so from January 1996, it was brought out as Issues in Medical Ethics. Later, when the Registrar of Newspapers accepted our application for the change in name, the journal started coming out as Indian Journal of Medical Ethics from January 2004."

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Approval of the Resolution governing the ethics of research in social sciences, the humanities, and other disciplines that use methodologies characteristic of these areas: challenges and achievements (Iara Coelho Zito Guerriero 2016)

INTRODUCTION On April 6 2016, the National Board of Health (CNS) approved the Resolution governing the ethical specificities of research in social sciences and the humanities, as well as in other disciplines that use methodologies characteristic of these areas (SSH Resolution). This is the first Brazilian standard focused specifically on... More

INTRODUCTION On April 6 2016, the National Board of Health (CNS) approved the Resolution governing the ethical specificities of research in social sciences and the humanities, as well as in other disciplines that use methodologies characteristic of these areas (SSH Resolution). This is the first Brazilian standard focused specifically on these areas. The text is waiting for approval from the Ministry of Health and publication in the Federal Daily Gazette (DOU). Herein we present the Working Group in Social Sciences and the Humanities of the National Research Ethics Committee (SSH/CONEP WG), its working processes and the main progress and challenges of the SSH Resolution. In July 2013, the National Research Ethics Committee (CONEP) organized a working group to draft the minutes of a resolution on the ethical specificities of research in social sciences and the humanities across its full range of diversity, yet keeping a focus on protecting the human rights of study participants. Creating the SSH/CONEP WG was the result of old claims on the part of CONEP members in Social and Human Sciences (SSH), and of researchers and scientific associations. This claim was also recently reiterated by the Forum on Human, Social and Applied Human Sciences. The initial result of this strong demand was recognition, in CNS Resolution 466/12, of the need to draft such a resolution...

Guerriero Iara Coelho Zito. (2016) Approval of the Resolution governing the ethics of research in social sciences, the humanities, and other disciplines that use methodologies characteristic of these areas: challenges and achievements. Ciênc. saúde coletiva. 21(8)  pp2619-2629 ISSN 1413-8123. http://dx.doi.org/10.1590/1413-81232015218.17212016. Publisher (Open access): http://www.scielo.br/scielo.php?script=sci_arttext&pid=S1413-81232016000802619&lng=en&nrm=iso&tlng=en

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Applications and secretariat workload at the University of the Witwatersrand Human Research Ethics Committee (Medical) 2002 – 2011: A case study (Papers: Peter Cleaton-Jones 2012)

Published/Released on June 15, 2012 | Posted by Admin on September 6, 2016 | Keywords: , , , , , , , , , ,

Objective To examine trends in the numbers of new applications for ethics clearance of health research and associated research ethics committee secretariat activity. Methods Data were obtained from research ethics committee secretariat databases with ethics approval. Results General research applications increased from 440 in 2002 to 685 in 2011, all handled by one full-time... More

Objective To examine trends in the numbers of new applications for ethics clearance of health research and associated research ethics committee secretariat activity. Methods Data were obtained from research ethics committee secretariat databases with ethics approval. Results General research applications increased from 440 in 2002 to 685 in 2011, all handled by one full-time staff member. This load is expected to increase by 250 per year for 2012, 2013 and 2014 before reaching a plateau. This new applications load per year is based on registered clinical postgraduates at the University of the Witwatersrand in a 4-year specialisation who must comply with the new Health Professions Council of South Africa requirement for completion of Master’s level research in order to register as a clinical specialist. Sponsored clinical trials have remained and should remain at approximately 100 per year but require three staff members to attend to this workload. Conclusion The increased workload is a serious challenge and has to be tackled first by increasing the administrative staff number. Ethics screening of human research at the University of the Witwatersrand (Wits) began in October 1966 when John Hansen, head of the Department of Paediatrics, brought an important article in the June issue of the New England Journal of Medicine to the attention of the University authorities. In this article, Henry Beecher, Emeritus Professor of Anesthesiology at Harvard University, had described instances of unethical research and recommended the establishment of committees to oversee the rights of those participating in research.1 Wits agreed to form a human research ethics committee, which has functioned ever since and is currently registered for all types of research including clinical trials. The committee, based centrally in the Wits Research Office (WRO), was reorganised in 1998 when a secretariat for sponsored clinical trials was formed in the Wits Health Consortium Ethics Division (WHCED), a Section 21 company in the Faculty of Health Sciences. Both secretariats serve the same Human Research Ethics Committee (Medical) (HREC (Medical)). The committee has 37 members of various disciplines, includes members from outside Wits, and meets on the last Friday of January through November. Member attendance at meetings varies from 12 to 27. The first part of the meeting deals with clinical trials through the WHCED followed by general research applications from WRO. If an application is submitted as required by the 7th of a month through either secretariat, it is discussed at the same month’s meeting January through November. During 2011, there was an increase in complaints from applicants about delays before hearing the outcome of general research applications – this prompted the 10-year review of application numbers and workload at both secretariats reported in this article.

Cleaton-Jones P (2012) Applications and secretariat workload at the University of the Witwatersrand Human Research Ethics Committee (Medical) 2002 - 2011: A case study. South African Journal of Bioethics and Law. 5(1) pp38-44  ISSN 1999-7639 Publisher (Open access): http://www.sajbl.org.za/index.php/sajbl/article/view/194/202 

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Can an ethics officer role reduce delays in research ethics approval? A mixed-method evaluation of an improvement project (Papers: Mary Dixon-Woods et al 2016)

Abstract Objective - Frustration continues to be directed at delays in gaining approvals for undertaking health research in the UK. We aimed to evaluate the impact of an ethics officer intervention on rates of favourable opinions (approval) and provisional opinions (requiring revision and resubmission) and on the time taken to... More

Abstract Objective - Frustration continues to be directed at delays in gaining approvals for undertaking health research in the UK. We aimed to evaluate the impact of an ethics officer intervention on rates of favourable opinions (approval) and provisional opinions (requiring revision and resubmission) and on the time taken to reach a final opinion by research ethics committees (RECs), to characterise how the role operated in practice, and to investigate applicants' views. [colored_box]Design - Mixed-method study involving (i) a 2-group, non-randomised before-and-after intervention study of RECs assigned an ethics officer and a matched comparator group; (ii) a process evaluation involving a survey of applicants and documentary analysis. Participants - 6 RECs and 3 associated ethics officers; 18 comparator RECs; REC applicants. Results - Rates of provisional and favourable opinions between ethics officer and comparator RECs did not show a statistically significant effect of the intervention (logistic regression, p=0.26 for favourable opinions and p=0.31 for provisional opinions). Mean time to reach a decision showed a non-significant reduction (ANOVA, p=0.22) from 33.3 to 32.0 days in the ethics officer RECs compared with the comparator RECs (32.6 to 32.9 days). The survey (30% response rate) indicated applicant satisfaction and also suggested that ethics officer support might be more useful before submission. Ethics officers were successful in identifying many issues with applications, but the intervention did not function exactly as designed: in 31% of applicants, no contact between the applicants and the ethics officer took place before REC review. Limitations - This study was a non-randomised comparison cohort study. Some data were missing. Conclusions - An ethics officer intervention, as designed and implemented in this study, did not increase the proportion of applications to RECs that were approved on first review and did not reduce the time to a committee decision. Publisher (Open access)http://bmjopen.bmj.com/content/6/8/e011973.full Less

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One size does not fit all: organisational diversity in New Zealand tertiary sector ethics committees (Papers: Martin Tolich et al 2015)

Published/Released on May 27, 2015 | Posted by Admin on August 30, 2016 | Keywords: , , , , , , ,

Abstract New Zealand tertiary ethics committees may work from similar ethical principles but this article demonstrates that the way in which they operate is idiosyncratic. The paper builds on commentaries offered by current or former members of five New Zealand ethics committees on the organisation and practices of their committees.... More

Abstract New Zealand tertiary ethics committees may work from similar ethical principles but this article demonstrates that the way in which they operate is idiosyncratic. The paper builds on commentaries offered by current or former members of five New Zealand ethics committees on the organisation and practices of their committees. It examines differences among the committees with the aim of initiating an ongoing conversation about the work of ethics committees in the New Zealand context. It argues for the merits of diversity, transparency and openness as core principles for the work of ethics committees and as a platform for dealing with critique. Keywords: centralisation, diversity, ethics committees, New Zealand, universities,

Tolich M, Bathurst R, Deckert A, Flanagan P, Gremillion H and Grimshaw M (2015) One size does not fit all: organisational diversity in New Zealand tertiary sector ethics committees. Kōtuitui: New Zealand Journal of Social Sciences Online, 11(1). http://dx.doi.org/10.1080/1177083X.2015.1035732 Publisher: http://www.tandfonline.com/doi/abs/10.1080/1177083X.2015.1035732

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Damaging Real Lives Through Obstinacy: Re-Emphasising Why Significance Testing is Wrong (Papers: Stephen Gorard 2016)

Published/Released on February 28, 2016 | Posted by Admin on August 28, 2016 | Keywords: , , , , , , ,

Abstract This paper reminds readers of the absurdity of statistical significance testing, despite its continued widespread use as a supposed method for analysing numeric data. There have been complaints about the poor quality of research employing significance tests for a hundred years, and repeated calls for researchers to stop using... More

Abstract This paper reminds readers of the absurdity of statistical significance testing, despite its continued widespread use as a supposed method for analysing numeric data. There have been complaints about the poor quality of research employing significance tests for a hundred years, and repeated calls for researchers to stop using and reporting them. There have even been attempted bans. Many thousands of papers have now been written, in all areas of research, explaining why significance tests do not work. There are too many for all to be cited here. This paper summarises the logical problems as described in over 100 of these prior pieces. It then presents a series of demonstrations showing that significance tests do not work in practice. In fact, they are more likely to produce the wrong answer than a right one. The confused use of significance testing has practical and damaging consequences for people's lives. Ending the use of significance tests is a pressing ethical issue for research. Anyone knowing the problems, as described over one hundred years, who continues to teach, use or publish significance tests is acting unethically, and knowingly risking the damage that ensues. Keywords: Significance Testing, Inverse Probabilities, Statistical Errors, Ethics of Social Research

Gorard S (2016) Damaging Real Lives Through Obstinacy: Re-Emphasising Why Significance Testing is Wrong. Sociological Research Online, 21 (1), 2 DOI: 10.5153/sro.3857 http://www.socresonline.org.uk/21/1/2.html

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Ethics in Violence and Abuse Research – a Positive Empowerment Approach (Papers: Julia Downes, et al 2014)

Abstract Research governance, including research ethics committees and data protection legislation, is invested in protecting the individual rights of participants in social care and health research. Increasingly funders expect evidence of outcomes that engage with 'service users', making research critical in supporting social interventions to compete for scant resources in an economic climate marked by 'austerity' (Sullivan 2011). This article focuses on the tensions that can arise from the research governance of violence and abuse research. We argue that increased scrutiny of violence and abuse as a 'sensitive' topic that involves 'vulnerable' groups has made ethical clearance more challenging, which in turn can lead to a dangerous lack of evidence. This can have a harmful impact upon women and children and leave specialised violence and abuse services facing a precarious future. Drawing on recent debates we describe the 'positive empowerment' approach used to engage victim-survivors and perpetrators of domestic violence... More

Abstract Research governance, including research ethics committees and data protection legislation, is invested in protecting the individual rights of participants in social care and health research. Increasingly funders expect evidence of outcomes that engage with 'service users', making research critical in supporting social interventions to compete for scant resources in an economic climate marked by 'austerity' (Sullivan 2011). This article focuses on the tensions that can arise from the research governance of violence and abuse research. We argue that increased scrutiny of violence and abuse as a 'sensitive' topic that involves 'vulnerable' groups has made ethical clearance more challenging, which in turn can lead to a dangerous lack of evidence. This can have a harmful impact upon women and children and leave specialised violence and abuse services facing a precarious future. Drawing on recent debates we describe the 'positive empowerment' approach used to engage victim-survivors and perpetrators of domestic violence in Project Mirabal. We conclude with recommendations for ethical decision-making in violence and abuse research: (i) to reconsider participants as active agents and stakeholders; (ii) to prioritise the development of skilled researchers; (iii) to develop situated processes of informed consent and confidentiality; and (iv) to continue to discuss and share practical experiences of feminist research practice that seeks to deliver justice and social change. Keywords: Research Governance, Research Ethics, Research Design, Confidentiality, Informed Consent, Violence, Abuse

Downes J, Kelly L and Westmarland N (2014) Ethics in Violence and Abuse Research - a Positive Empowerment Approach. Sociological Research Online, 19 (1) 2 10.5153/sro.3140 http://www.socresonline.org.uk/19/1/2.html

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Promises, Promises: Lessons in Research Ethics from the Belfast Project and ‘The Rape Tape’ Case (Papers: Kay Inckle 2015)

Abstract This paper draws on two social research projects which have made headline news in the Republic of Ireland since 2011: The Belfast Project which was conducted by ex-paramilitary researchers in Northern Ireland in conjunction with Boston College in the USA, alongside what the media dubbed as 'The Rape Tape'... More

Abstract This paper draws on two social research projects which have made headline news in the Republic of Ireland since 2011: The Belfast Project which was conducted by ex-paramilitary researchers in Northern Ireland in conjunction with Boston College in the USA, alongside what the media dubbed as 'The Rape Tape' case involving a postgraduate student from Maynooth University in the Republic of Ireland. Considered together, these cases highlight contrasting approaches to ethics which have significant lessons for sociologists teaching and conducting ethical research. The cases illustrate how sociologists need to model nuanced yet robust approaches to ethics if we are to avoid causing harm to research participants and to produce students with solid ethical skills which they can utilise in a range of contexts. Such an approach combines ontological foundations with reflexive, context specific applications. The paper begins with an outline of the two cases based on documentary sources. The cases are then considered in the context ethical definitions and protocols from academic texts and professional sociological bodies across the three affected jurisdictions (UK, Ireland, USA) in order to reflect on the lessons and implications for sociologists in conducting and teaching ethical research. Keywords: Research Ethics, Sensitive Research, the Belfast Project, the Rape Tape Case

Inckle K (2015) Promises, Promises: Lessons in Research Ethics from the Belfast Project and 'The Rape Tape' Case. Sociological Research Online, 20 (1), 6 DOI: 10.5153/sro.3570 Publisher: http://www.socresonline.org.uk/20/1/6.html

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An Alternative Ethics? Justice and Care as Guiding Principles for Qualitative Research (Papers: Martyn Hammersley and Anna Traianou 2014)

Abstract The dominant conception... More

Abstract The dominant conception of social research ethics is centred on deontological and consequentialist principles. In place of this, some qualitative researchers have proposed a very different approach. This appeals to a range of commitments that transform the goal of research as well as framing how it is pursued. This new ethics demands a participatory form of inquiry, one in which the relationship between researchers and researched is equalized. In this paper we examine this alternative approach, focusing in particular on two of the principles that are central to it: justice and care. We argue that there are some significant defects and dangers associated with this new conception of research ethics. Keywords: Research Ethics, Qualitative Research, Justice, Care, Participatory Inquiry

Hammersley M & Traianou A (2014) An Alternative Ethics? Justice and Care as Guiding Principles for Qualitative Research. Sociological Research Online, 19 (3), 24 DOI: 10.5153/sro.3466 http://www.socresonline.org.uk/19/3/24.html

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Transferring from Clinical Pharmacy Practice to Qualitative Research: Questioning Identity, Epistemology and Ethical Frameworks (Papers: Adam Pattison Rathbone and Kimberly Jamie 2016)

Abstract Researcher identity can present methodological and practical, as well as epistemological and ethical tensions, in sociological research. Identity management, such as the presentation of the self during a research interview, can have significant effects on the research encounter and data collected. 'White coat syndrome', the disjointed interaction between clinicians... More

Abstract Researcher identity can present methodological and practical, as well as epistemological and ethical tensions, in sociological research. Identity management, such as the presentation of the self during a research interview, can have significant effects on the research encounter and data collected. 'White coat syndrome', the disjointed interaction between clinicians and patients arising from unequal power and expertise, can occur in research encounters. For clinicians engaged in social science research, identity management can be particularly challenging given the added potential for 'white coat syndrome'. Drawing on the experiences of a registered pharmacist undertaking qualitative research, we discuss the epistemological transition many clinicians go through when embarking on sociological research. We suggest that identity management is not just a matter of optimising data collection but also has ethical tensions. Drawing on Goffman's social role theory, we discuss the epistemic tensions between researchers' dual identities through positivist and constructivist frames, discussing the professional and legal implications, as well as the methodological practicalities of identity negotiation. We discuss conflicting professional and regulatory ethical frameworks, and ethics committees' negotiation of intervention and elicitation during research encounters and the conflict in managing professional, legal and clinical responsibilities whilst adhering to expected social research conventions. Keywords: Identity, Sociological, Ethics, Pharmacist, Clinical Researcher, Healthcare Professional

Rathbone AP and Jamie K (2016) Transferring from Clinical Pharmacy Practice to Qualitative Research: Questioning Identity, Epistemology and Ethical Frameworks. Sociological Research Online, 21 (2), 4 DOI: 10.5153/sro.3888 http://www.socresonline.org.uk/21/2/4.html

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The Challenge of Technology Research in Sensitive Settings: Case Studies in ‘Sensitive HCI’ (Papers: Jenny Waycott et al 2015)

Published/Released on December 07, 2015 | Posted by Admin on August 12, 2016 | Keywords: , , ,

ABSTRACT A growing proportion of human-computer interaction research now takes place in sensitive settings with participants who might be considered vulnerable, such as the chronically ill, older adults, and people living with mental health issues. Alongside this move into complex “real life” settings there is growing interest in the ethical challenges HCI researchers encounter, the emotional impact... More

ABSTRACT A growing proportion of human-computer interaction research now takes place in sensitive settings with participants who might be considered vulnerable, such as the chronically ill, older adults, and people living with mental health issues. Alongside this move into complex “real life” settings there is growing interest in the ethical challenges HCI researchers encounter, the emotional impact research can have on participants and researchers, and the risk that new technologies might exacerbate, rather than ameliorate, existing vulnerabilities. Some authors have called for researchers to openly reflect about ethical challenges so we can learn from shared experiences. Others have warned that HCI researchers may not be sufficiently equipped to understand and respond to the needs of vulnerable participants. This paper documents cases of “sensitive HCI,” drawing on research conducted in diverse sensitive settings. By reflecting on common challenges and discussing possible responses we contribute to growing discourse that promotes reflexive practice in sensitive HCI. Author Keywords Sensitive HCI; HCI research; Sensitive settings; ACM Classification Keywords H5.m. Information interfaces and presentation (e.g., HCI): Miscellaneous.

Waycott J, Wadley G, Schutt S, Stabolidis A, & Lederman R. (2015). The Challenge of Technology Research in 'Sensitive HCI'. In Proceedings OzCHI 2015, pp. 240-249. Available from the lead author: http://www.jwaycott.com/uploads/1/2/1/8/12187076/waycott_et_al_ozchi_2015.pdf

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Situational Ethics: Re-thinking Approaches to Formal Ethics Requirements for Human-Computer Interaction (Papers: Cosmin Munteanu et al)

Most Human-Computer Interaction (HCI) researchers are accustomed to the process of formal ethics review for their evaluation or field trial protocol. Although this process varies by country, the underlying principles are universal. While this process is often a formality, for field research or lab-based [colored_box] studies with vulnerable users, formal ethics... More

Most Human-Computer Interaction (HCI) researchers are accustomed to the process of formal ethics review for their evaluation or field trial protocol. Although this process varies by country, the underlying principles are universal. While this process is often a formality, for field research or lab-based [colored_box] studies with vulnerable users, formal ethics requirements can be challenging to navigate -- a common occurrence in the social sciences; yet, in many cases, foreign to HCI researchers. Nevertheless, with the increase in new areas of research such as mobile technologies for marginalized populations or assistive technologies, this is a current reality. In this paper we present our experiences and challenges in conducting several studies that evaluate interactive systems in difficult settings, from the perspective of the ethics process. Based on these, we draft recommendations for mitigating the effect of such challenges to the ethical conduct of research. We then issue a call for interaction researchers, together with policy makers, to refine existing ethics guidelines and protocols in order to more accurately capture the particularities of such field-based evaluations, qualitative studies, challenging lab-based evaluations, and ethnographic observations. . Keywords: Ethics; Research protocol; Field studies; Situational ethics; Vulnerable populations. .

Munteanu C, Molyneaux H, Moncur W, Romero M, O'Donnell S and Vine J (2015) Situational Ethics: Re-thinking Approaches to Formal Ethics Requirements for Human-Computer Interaction at the 2nd 33rd Annual ACM Conference on Human Factors in Computing Systems Proceedings pp 105-114 ACM New York, NY, USA ©2015  ISBN: 978-1-4503-3145-6 doi>10.1145/2702123.2702481. ResearchGate: www.researchgate.net/publication/273089965_Situational_Ethics... Publisher: http://dl.acm.org/citation.cfm?id=2702481

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Blurred lines: A reflection on the ethical dilemmas encountered during the ‘Google Glass for Parkinson’s’ project (Papers: Roisin McNaney and John Vines 2015)

Abstract: In this paper we reflect upon the ethical dilemmas we faced during our research looking at the potential for using Google Glass as an assistive device for people with Parkinson’s (PwP). We report findings around the issues participants had during the trial and how these led to feelings of lowered self-confidence, and in one case... More

Abstract: In this paper we reflect upon the ethical dilemmas we faced during our research looking at the potential for using Google Glass as an assistive device for people with Parkinson’s (PwP). We report findings around the issues participants had during the trial and how these led to feelings of lowered self-confidence, and in one case self-worth, and how prior positive publicity around Glass led to levels of hope which were not founded by the research. We also take the opportunity to reflect upon how researcher vulnerabilities can be exposed throughout the research process by discussing concepts around professional roles and how these can become blurred when working with participants over longer periods of time within the home context. Author Keywords: Ethics, Google Glass, Parkinson’s, Self-Management

McNaney R & Vines J (2015) Blurred lines: A reflection on the ethical dilemmas encountered during the ‘Google Glass for Parkinson’s’ project. In CHI 2015 Workshop on Ethical Encounters in HCI: Research in Sensitive Settings. Seoul, Korea on April 18th 2015. Available at: https://ethicalencountershci.files.wordpress.com/2015/03/chi-2015-ethical-encounters_p1-mcnaney-and-vines.pdf

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Resourcing reflective practice – whiteboard video

The AHRECS team is thrilled to share this seven-and-a-half minute video about the value and importance of resourcing the reflective practice of research, rather than focussing on enforcing compliance with rules.

[embed]https://youtu.be/ooBtfzRseak[/embed]
Be a voice for constructive change! Please promote this video throughout your networks. Please contact us by emailing gary.allen@ahrecs.com if... More

The AHRECS team is thrilled to share this seven-and-a-half minute video about the value and importance of resourcing the reflective practice of research, rather than focussing on enforcing compliance with rules.

[embed]https://youtu.be/ooBtfzRseak[/embed]
Be a voice for constructive change! Please promote this video throughout your networks. Please contact us by emailing gary.allen@ahrecs.com if you want help in moving your institution move to a resourcing reflective practice approach. The script for this whiteboard was written by Dr Gary Allen and it is spoken by Adj Prof Mark Israel. It was produced for us by the very talented BethanyDivaa through Fiverr.com. Less

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What We Know About Ethical Research Involving Children in Humanitarian Settings: An overview of principles, the literature and case studies (Papers: Gabrielle Berman, et al)

This working paper identifies and explores the issues that should be considered when undertaking ethical research involving children in humanitarian settings. Both the universal (i.e. relevant to all research involving children) and specific ethical issues that may arise when involving children in research in humanitarian settings are examined. This... More

This working paper identifies and explores the issues that should be considered when undertaking ethical research involving children in humanitarian settings. Both the universal (i.e. relevant to all research involving children) and specific ethical issues that may arise when involving children in research in humanitarian settings are examined. This is undertaken through a review of the literature, relevant case studies, and a reflection on the ethical issues highlighted in UNICEF’s Procedure for Ethical Standards in Research, Evaluation, Data Collection and Analysis (the Ethics Procedure). The key findings of this overview highlight that many of the ethical issues that are present in other settings remain relevant and applicable in the context of humanitarian settings. These include: an institution’s capacity to appropriately and respectfully engage children in research, understanding power relations, securing informed consent and assent, ascertaining harms and benefits, maintaining privacy and confidentiality, and ensuring appropriate communication of findings.

Berman G, Hart J, O'Mathúna D, Mattellone E, Potts A, O'Kane Clare, Shusterman J and Tanner T (2016). What We Know about Ethical Research Involving Children in Humanitarian Settings: An overview of principles, the literature and case studies, Innocenti Working Papers. 2016 (18) UNICEF Office of Research - Innocenti, Florence Publisher: https://www.unicef-irc.org/publications/849/

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Beneficence as a principle in human research (Papers: Ian Pieper & Colin Thomson 2016)

Abstract Beneficence is one of the four principles that form the basis of the Australian National Statement. The aim of this paper is to explore the philosophical development of this principle and to clarify the role that beneficence plays in contemporary discussions about human research ethics.... More

Abstract Beneficence is one of the four principles that form the basis of the Australian National Statement. The aim of this paper is to explore the philosophical development of this principle and to clarify the role that beneficence plays in contemporary discussions about human research ethics. By examining the way that guidance documents, particularly the National Statement, treats beneficence we offer guidance to researchers and human research ethics committee members on the practical application of what can be a conceptually difficult principle. Keywords Beneficence, Human research ethics, Ethics, HREC, National Statement

Pieper I & Thomson C (2016) Beneficence as a principle in human research. Monash Bioethics Review. pp1-19. doi:10.1007/s40592-016-0061-3 Publisher: http://link.springer.com/article/10.1007/s40592-016-0061-3

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Are Research Ethics Obsolete In The Era Of Big Data? (Papers: June 2016)

This story began simply enough as I was writing this past May about the OkCupid data release. The researchers involved in the study had mass downloaded the profiles of more than 70,000 OkCupid users, republishing for the world the most intimate details of these users right down to their... More

This story began simply enough as I was writing this past May about the OkCupid data release. The researchers involved in the study had mass downloaded the profiles of more than 70,000 OkCupid users, republishing for the world the most intimate details of these users right down to their wildest sexual[colored_box] fantasies. In their now-unavailable paper the authors had argued that “Some may object to the ethics of gathering and releasing this data. However, all the data found in the dataset are or were already publicly available, so releasing this dataset merely presents it in a more useful form.” In a now-famous tweet, the lead author said that no effort had been put into anonymizing the data because “[The] Data is already public.” The academic community reacted swiftly to the data release, condemning it as a stark violation of research ethics. Many cited the American Psychological Associations’ Code of Conduct which places strong limitations on when informed consent can be ignored and general human subjects protections, suggesting that if only the researchers had gone through an Institutional Review Board (IRB) approval process, the study would have been stopped before it began. Yet, this suggests that universities and their IRBs have finally caught up to the digital “big data” era and would have actually declined this study if it had been brought before them for review. For those unfamiliar with how academic research works, some countries like the United States require most research institutions like universities receiving federal funds to have what is called an Institutional Review Board (IRB) that essentially is a panel of campus experts who review proposed research and determine whether any potential ethical concerns it might pose are mitigated by the methodology or nature of the specific project. These IRBs largely follow the so-called federal Common Rule. Before conducting a given study, a researcher submits it to the IRB board at her university and only after the IRB approves the research may the study actually begin. If the IRB declines to authorize the study, the researcher must work with the IRB to alter its nature or methods to address the IRB’s concerns, but if the researcher is unable to meet the IRB’s demands then the research, in theory, must not be conducted.

Leetaru K (2016, 17 June) Are Research Ethics Obsolete In The Era Of Big Data? Forbes/Tech http://www.forbes.com/sites/kalevleetaru/2016/06/17/are-research-ethics-obsolete-in-the-era-of-big-data/#1a083ad31cb9

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A Tool to Help Address Key Ethical Issues in Research – Journal of Medical Ethics Blog (Rebecca H. Li and Holly Fernandez Lynch 2016)

One of the most important responsibilities of a cl... More

One of the most important responsibilities of a clinical project lead at a biotech company or an academic research team is to generate clinical trial protocols. The protocol dictates how a trial will be conducted and details background information on prior research, scientific objectives, study rationale, research methodology and design, participant eligibility criteria, anticipated risks and benefits, how adverse events will be handled, plans for statistical analysis, and other topics. Many protocol authors use as a starting point a “standardised” protocol template from their funder or institution. These templates often provide standard language, and sections for customisation, sometimes with various “pick-and-choose” options based on the nature of the research. They inevitably cover each of the key topics listed above, but often fail to include ethical principles and considerations beyond the regulatory requirement of informed consent. Indeed, the process of protocol writing has traditionally focused on scientific detail, with ethical analysis often left to institutional review boards (IRBs) and research ethics committees (RECs); unfortunately, robust discussion of specific ethical issues is often absent from clinical trial protocols. When IRBs and RECs convene to review protocols, they are expected to evaluate whether the study will adequately protect enrolled participants. When the protocol fails to address potential ethical concerns explicitly, reviewers are left to speculate: did the investigator consider the concern, but dismiss it as not relevant in this particular context; did the investigator fail to understand the concern; does the investigator have an appropriate plan in place to resolve the concern, but has left it unstated in the protocol? This uncertainty can contribute to delays as reviewers debate among themselves, and can require lengthy back-and-forth with researchers, including series of protocol revisions and re-reviews until clarity is established. In some cases, it may also be that reviewers with less experience or expertise fail to identify an ethical concern that has not been brought to their attention in a protocol.

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Research ethics needs fine tuning, not rigidity: how to promote evidence in neglected patient populations by rethinking informed consent (Papers: J. Wouter Jukema et al 2015)

Introduction Well-conducted biomedical research tells us how best to act in various clinical situations. In order to do so, ethical and legal rules have been developed over time for optimal study conduct, with special attention to the subjects involved in these studies. This includes asking informed consent before including... More

Introduction Well-conducted biomedical research tells us how best to act in various clinical situations. In order to do so, ethical and legal rules have been developed over time for optimal study conduct, with special attention to the subjects involved in these studies. This includes asking informed consent before including a person in a clinical trial, and protection of fragile and mentally incompetent individuals by restricting and regulating their participation in biomedical research. Apart from the obvious positive effects, these regulations may also lead to unintended restrictions, and as a result not all relevant patient subgroups are sufficiently included in human clinical research. Consequently, important questions on how to optimally treat certain patient groups remain unanswered. The objective of this ‘current opinion’ article is to explore how therapeutic scientific research and procedures can be better exploited, to advance clinical expertise and to discuss ethical issues that need to be considered in that context. For that purpose, we reflect on the challenges and consequences of patient selection, studies in acute care setting, and comparison of established therapies, in the final part illustrated by discussing some relevant recent clinical trials. We all appreciate the fact that biomedical research in humans should be guided by high ethical standards, as outlined in the Declaration of Helsinki,1 among which informed consent of the subject before participation in a trial. Nevertheless, we propose that, in order to obtain optimal scientific and clinical data, certain study types should not require (pre-study) informed consent, while still guaranteeing patients essential (ethical) rights and safety.

Jukema JW, Brouwer JR, Lüscher TF, Engberts DP, Quax PHA (2015) Research ethics needs fine tuning, not rigidity: how to promote evidence in neglected patient populations by rethinking informed consent. European Heart Journal. 36(40):2681-5. doi: 10.1093/eurheartj/ehv358. Publisher: http://eurheartj.oxfordjournals.org/content/early/2015/07/28/eurheartj.ehv358

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Unsuccessful trial accrual and human subjects protections: an empirical analysis of recently closed trials (Papers: Benjamin Carlisle et al 2014)

Abstract Background Ethical evaluation of risk–benefit in clinical trials is premised on the achievability of resolving research questions motivating an investigation. Objective To determine the fraction and number of patients enrolled in trials that were at risk of not meaningfully addressing their primary research objective due to unsuccessful patient accrual. Methods We used the National... More

Abstract Background Ethical evaluation of risk–benefit in clinical trials is premised on the achievability of resolving research questions motivating an investigation. Objective To determine the fraction and number of patients enrolled in trials that were at risk of not meaningfully addressing their primary research objective due to unsuccessful patient accrual. Methods We used the National Library of Medicine clinical trial registry to capture all initiated phases 2 and 3 intervention clinical trials that were registered as closed in 2011. We then determined the number that had been terminated due to unsuccessful accrual and the number that had closed after less than 85% of the target number of human subjects had been enrolled. Five factors were tested for association with unsuccessful accrual. Results Of 2579 eligible trials, 481 (19%) either terminated for failed accrual or completed with less than 85% expected enrolment, seriously compromising their statistical power. Factors associated with unsuccessful accrual included greater number of eligibility criteria (p = 0.013), non-industry funding (25% vs 16%, p \ 0.0001), earlier trial phase (23% vs 16%, p \ 0.0001), fewer number of research sites at trial completion (p \ 0.0001) and at registration (p \ 0.0001), and an active (non-placebo) comparator (23% vs 16%, p \ 0.001). Conclusion A total of 48,027 patients had enrolled in trials closed in 2011 who were unable to answer the primary research question meaningfully. Ethics bodies, investigators, and data monitoring committees should carefully scrutinize trial design, recruitment plans, and feasibility of achieving accrual targets when designing and reviewing trials, monitor accrual once initiated, and take corrective action when accrual is lagging. Keywords Medical ethics, research ethics, clinical trials, trial accrual, recruitment

Carlisle B, Kimmelman J, Ramsay T and MacKinnon N (2014) Unsuccessful trial accrual and human subjects protections: an empirical analysis of recently closed trials. Clinical Trials. 12(1):77-83. doi: 10.1177/1740774514558307. Publisher: http://ctj.sagepub.com/content/12/1/77.long

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Ethical and Philosophical Consideration of the Dual-Use Dilemma in the Biological Sciences (Report: Seumas Miller and Michael Selgelid 2006)

Published/Released on November 13, 2006 | Posted by Admin on June 25, 2016 | Keywords: , , , , , , , ,

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AAA Comments on Notice of Proposed Rule Making for IRBs (Papers: Rena Lederman & Lise Dobrin 2016)

Below are some excerpts from the 18-page comment s... More

Below are some excerpts from the 18-page comment submitted by the AAA to the Office of Human Research Protections on January 6, 2016, in response to the proposed changes in the “Common Rule”, the federal regulations that motivate the system of research ethics review that is implemented by IRBs. The AAA comment was authored on the AAA’s behalf by Rena Lederman (Princeton University) and Lise Dobrin (University of Virginia). An overview of the Notice of Proposed Rulemaking (NPRM) and the full text of the AAA’s response can be found here. On the NPRM’s proposal to expand the definition of “human subject” to include even non-identified biospecimens: The American Anthropological Association is in general accord with the principle of “autonomy” (or “respect for persons”) underlying this NPRM proposal to change the definition of Human Subject. Anthropologists and their study participants have objected to the reduction of biospecimens to “data” (i.e., values detachable from their sources); they have pointed out that blood, tissue samples and the like can come to stand for persons and be invested with specific social, cultural, and ritual values. On the problematic omission of sociocultural anthropology’s signature methods from both the Common Rule and the proposed rule change: Our first and most important general comment is that several of the proposed changes will deepen, rather than alleviate, ambiguity. This is especially true with respect to sociocultural anthropologists’ most characteristic research activity – “participant observation” (also referred to as “ethnographic fieldwork”, “fieldwork”, and similar terms) – which finds no place within the existing Common Rule at all. Insofar as the proposed changes likewise make no mention of participant observation, anthropologists and others who employ this approach—along with their IRBs—are left entirely in the dark. This situation promises to keep ethnographic field projects that rely on participant observation in “expedited” or “full board” categories when according to the logic behind the NPRM they should be “exempt” or “excluded”...

Lederman R & Dobrin L (2016) AAA Comments on Notice of Proposed Rule Making for IRBs. AAA Ethics Blog http://ethics.americananthro.org/aaa-comments-on-notice-of-proposed-rule-making-for-irbs/

The AAA issued an update about the changes to the common rule on 23 May 2016. You can view the update here Less

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History, Ethics and the Presidential Commission on Research in Guatemala (Papers: Barry Lyons 2014)

Abstract: In 2010, President Obama instructed the Presidential Commission for the Study of Bioethical Issues to enquire into research carried out by the US Public Health Service in Guatemala between 1946 and 1948. These studies entailed the deliberate inoculation of unconsenting prisoners, mental asylum patients and soldiers, with venereal disease.... More

Abstract: In 2010, President Obama instructed the Presidential Commission for the Study of Bioethical Issues to enquire into research carried out by the US Public Health Service in Guatemala between 1946 and 1948. These studies entailed the deliberate inoculation of unconsenting prisoners, mental asylum patients and soldiers, with venereal disease. There was also evidence of deception and secrecy. The Commission’s report describes the research as heinous, egregious, unconscionable and unjustifiable, and identified those responsible as morally blameworthy. However, this article argues that the Commission was deficient in its historical analysis, and failed to appreciate particular disease and temporal factors that might cast the research in a slightly different light. This is not to exculpate the researchers, but rather to critique the Commission’s analysis. The straightforward narrative woven by the Commission does not accurately reflect the muddy ethical waters of the time, nor the utilitarian ethos that pervaded particular research agendas. The creation of a facile story denies to us a proper understanding of why events unfolded as they did, and as a consequence a potential lack of comprehension of those elements that might prevent unethical and harmful research practices from being conducted in the future.

Lyons B (2014) History, Ethics and the Presidential Commission on Research in Guatemala. Public Health Ethics doi: 10.1093/phe/phu019 Publisher: http://phe.oxfordjournals.org/content/early/2014/07/25/phe.phu019

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Hysterical inquiry and autoethnography: A lacanian alternative to institutionalized ethical commandments (Papers: Andrew Dickson and Kate Holland 2016)

Abstract: This article questions the ethical commandments issued by research ethics committees, particularly in relation to autoethnography, and points towards an alternative based on an examination and application of the psychoanalytic ethics of hysterical inquiry. The authors demonstrate the ethics of hysterical inquiry in operation in qualitative research via a... More

Abstract: This article questions the ethical commandments issued by research ethics committees, particularly in relation to autoethnography, and points towards an alternative based on an examination and application of the psychoanalytic ethics of hysterical inquiry. The authors demonstrate the ethics of hysterical inquiry in operation in qualitative research via a discussion of an autoethnography by Elizabeth Dauphinee and contrast this with a paper ‘on’ autoethnography by Martin Tolich. They argue that these two very different offerings can be positioned respectively as from Lacan’s hysteric’s discourse and the university’s discourse. Finally the authors conclude that hysterical inquiry with its focus on desire can provide a way forward for radical qualitative research, a way out of the binds of institutionalized ethical commandments that threaten the radical potential of qualitative research. Keywords: Autoethnography ethics ethics committees hysteric hysterical inquiry Lacan psychoanalysis qualitative research

Dickson A, and Holland K (2016) Hysterical inquiry and autoethnography: A lacanian  alternative to institutionalized ethical commandments. Current Sociology. doi: 10.1177/0011392115623603 Publisher: http://csi.sagepub.com/content/early/2016/02/02/0011392115623603.abstract

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A Critique of Current Practice: Ten Foundational Guidelines for Autoethnographers (Martin Tolich 2010)

Abstract: Any research is potentially compromised when researchers address ethical issues retrospectively rather than by anticipating these issues. In this regard, creative analytical practices (CAP) autoethnography has endemic problems. In Part 1 of this article, I detail a case study of an autoethnography in which journal reviewers insisted that... More

Abstract: Any research is potentially compromised when researchers address ethical issues retrospectively rather than by anticipating these issues. In this regard, creative analytical practices (CAP) autoethnography has endemic problems. In Part 1 of this article, I detail a case study of an autoethnography in which journal reviewers insisted that an author gain retrospective informed consent from the 23 persons documented in an autoethnography. Yet the journal reviewers’ insistence failed to go one step further—acknowledging that a conflict of interest develops when gaining consent retrospectively. In Part 2, I contrast three leading autoethnographers’ justifications for not gaining informed consent with the Position Statement on Qualitative Research developed by successive Congresses of Qualitative Inquiry. In Part 3, I identify resources available for autoethnographers, including ethical issues present when researchers use autoethnography to heal themselves, violating the internal confidentiality of relational others. In Part 4, I question if autoethnography is research and, like journalism, exempt from formal ethics review. Throughout the article, 10 foundational ethical considerations for autoethnographers are developed, taking autoethnographers beyond procedural ethics and providing tools for their ethics in practice. Keywords: ethics / moral perspectives; ethnography; photography / photovoice; research, qualitative

Tolich (2010) A Critique of Current Practice: Ten Foundational Guidelines for Autoethnographers. Qualitative Health Research. 20(12):1599-610. doi: 10.1177/1049732310376076. Publisher: http://qhr.sagepub.com/content/20/12/1599.long

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Is there a problem with the status quo? Debating the need for standalone ethical guidelines for research with people who use alcohol and other drugs (Papers: Anna Olsen and Julie Mooney-Somers 2014)

Abstract: In 2011, the Australian National Health and Medical Research Council (NHMRC) initiated an inquiry to determine whether there is a need for expanded ethical guidance in the form of a discrete guidance document for alcohol and other drug (AOD) research. An issues paper was developed to frame the inquiry.... More

Abstract: In 2011, the Australian National Health and Medical Research Council (NHMRC) initiated an inquiry to determine whether there is a need for expanded ethical guidance in the form of a discrete guidance document for alcohol and other drug (AOD) research. An issues paper was developed to frame the inquiry. AOD researchers, Human Research Ethics Committees and others were invited to discuss whether there are distinctive ethical issues facing researchers and Human Research Ethics Committees in the AOD setting. Based on the public submissions, the NHMRC recommended that no AOD research-specific guidance is required. The inquiry and the NHMRC decision were not widely publicized, and we feel there is a need for further discussion. In order to do so, we have analysed the public inquiry submissions and described the central themes. Few submissions in the inquiry explicitly agreed AOD research warrants a specific guidance framework. Most were concerned that the NHMRC issues paper unfairly targeted people who use drugs as complex research participants. The inquiry highlights tensions around research governance and ethics review boards dealing with illicit and stigmatised behaviours. While we agree that a specific guidance framework for AOD research is not needed and could potentially be harmful and restrictive, we are concerned that the wholesale rejection of a guidance framework has closed the door to much needed debate. There remains, we argue, a need for alternative strategies and tools to support ethical research, inform and streamline institutional ethics approval, and engage and protect participants. KEYWORDS: Human Research Ethics Committee; drug; ethics; guideline; research

Olsen A & Mooney-Somers J (2014) Is there a problem with the status quo? Debating the need for standalone ethical guidelines for research with people who use alcohol and other drugs. Drug Alcohol Review. 33(6):637-42. doi: 10.1111/dar.12140 Publisher: http://onlinelibrary.wiley.com/doi/10.1111/dar.12140/full

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Understanding Health Research Ethics in Nepal (Papers: Jeevan Sharma et al 2016)

Abstract: Unlike other countries in South Asia, in Nepal research in the health sector has a relatively recent history. Most health research activities in the country are sponsored by international collaborative assemblages of aid agencies and universities. Data from Nepal Health Research Council shows that, officially, 1,212 health research activities... More

Abstract: Unlike other countries in South Asia, in Nepal research in the health sector has a relatively recent history. Most health research activities in the country are sponsored by international collaborative assemblages of aid agencies and universities. Data from Nepal Health Research Council shows that, officially, 1,212 health research activities have been carried out between 1991 and 2014. These range from addressing immediate health problems at the country level through operational research, to evaluations and programmatic interventions that are aimed at generating evidence, to more systematic research activities that inform global scientific and policy debates. Established in 1991, the Ethical Review Board of the Nepal Health Research Council (NHRC) is the central body that has the formal regulating authority of all the health research activities in country, granted through an act of parliament. Based on research conducted between 2010 and 2013, and a workshop on research ethics that the authors conducted in July 2012 in Nepal as a part of the on-going research, this article highlights the emerging regulatory and ethical fields in this low-income country that has witnessed these increased health research activities. Issues arising reflect this particular political economy of research (what constitutes health research, where resources come from, who defines the research agenda, culture of contract research, costs of review, developing Nepal's research capacity, through to the politics of publication of data/findings) and includes questions to emerging regulatory and ethical frameworks. KEYWORDS: bioethics; developing world; global South; research ethics

Sharma JR, Khatri R and Harper I (2016) Understanding Health Research Ethics in Nepal. Developing World Bioethics. doi: 10.1111/dewb.12109. [Epub ahead of print] Publisher: http://onlinelibrary.wiley.com/doi/10.1111/dewb.12109/abstract

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Case Study Non-Mandatory Ethics Bodies at Austrian Universities (Papers: Erich Griessler 2015)

Abstract: This case study analyses all together nine non-mandatory organizations and sub-units of the Austrian university landscape that deal with questions of research ethics or – some of them, more broadly – with ethical questions of research. The paper studies these organizations’ tasks, organizational set-ups, modes of operation and the... More

Abstract: This case study analyses all together nine non-mandatory organizations and sub-units of the Austrian university landscape that deal with questions of research ethics or – some of them, more broadly – with ethical questions of research. The paper studies these organizations’ tasks, organizational set-ups, modes of operation and the extent to which they are doing well in terms of “managing contestation” and “responsibilisation” of research. Moreover, the paper looks into factors that promote and inhibit their work. The case study is based on document analysis (see Annex) and nine interviews with chairpersons or senior employees of ethics bodies. The interviews were conducted between April and June 2014; eight of them face to face at people’s workplaces and one via telephone. The interviews lasted between 60 and 90 minutes, were fully transcribed, paraphrased and analysed by thematic analysis. The sample includes six comprehensive and one technical university; one university specialized in veterinary medicine and one university specialized in agriculture and life sciences. It comprises different institutional responses to address the question of ethics in research and innovation. In five cases these universities established ethics commissions, other institutions are called “ethics platform”, “agency for scientific integrity”, “university commission for scientific integrity and ethics” and “advisory board for ethical questions in scientific research”. With the exception of one organization, which is a joint establishment of several member organizations comprising university and non-university research organizations, all other bodies are located within the university. This study concerns basic and applied research by Austrian publicly funded universities. However, it also touches upon issues of contract research from industry and the public sector which is carried out at public universities.

Griessler E (2015) Case Study Non-Mandatory Ethics Bodies at Austrian Universities. ResAGorA Publisher (Open access): http://irihs.ihs.ac.at/3686/1/IHS%20-%20Griessler_non%20mandatory%20ethics%20body_final.pdf This paper will be presented at the 4S/EASST conference, Barcelona August 31-September 3 2016

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Overview on health research ethics in Egypt and North Africa (Papers: Diaa Marzouk 2014)

Abstract: Developing countries, including Egypt and North African countries, need to improve their quality of research by enhancing international cooperation and exchanges of scientific information, as well as competing for obtaining international funds to support research activities. Research must comply with laws and other requirements for research that involves human... More

Abstract: Developing countries, including Egypt and North African countries, need to improve their quality of research by enhancing international cooperation and exchanges of scientific information, as well as competing for obtaining international funds to support research activities. Research must comply with laws and other requirements for research that involves human subjects. The purpose of this article is to overview the status of health research ethics in Egypt and North African countries, with reference to other Middle Eastern countries. The EU and North African Migrants: Health and Health Systems project (EUNAM) has supported the revision of the status of health research ethics in Egypt and North African countries, by holding meetings and discussions to collect information about research ethics committees in Egypt, and revising the structure and guidelines of the committees, as well as reviewing the literature concerning ethics activities in the concerned countries. This overview has revealed that noticeable efforts have been made to regulate research ethics in certain countries in the Middle East. This can be seen in the new regulations, which contain the majority of protections mentioned in the international guidelines related to research ethics. For most of the internationally registered research ethics committees in North African countries, the composition and functionality reflect the international guidelines. There is growing awareness of research ethics in these countries, which extends to teaching efforts to undergraduate and postgraduate medical students.

Marzouk D, Abd El Aa W, Saleh A, Sleem H, Khyatti M, Mazini L, Hemminki K, Anwar WA (2014) Overview on health research ethics in Egypt and North Africa. European Journal of Public Health. Vol. 24, Supplement 1, 87–91. doi: 10.1093/eurpub/cku110. Publisher (Open Access): http://eurpub.oxfordjournals.org/content/24/suppl_1/87.long

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A bibliometric analysis of privacy and ethics in IEEE Security and Privacy (Papers: Jonathan Tse et al 2015)

Abstract: The increasingly ubiquitous use of technology has led to the concomitant rise of intensified data collection and the ethical issues associated with the privacy and security of that data. In order to address the question of how these ethical concerns are discussed in the literature surrounding the subject, we... More

Abstract: The increasingly ubiquitous use of technology has led to the concomitant rise of intensified data collection and the ethical issues associated with the privacy and security of that data. In order to address the question of how these ethical concerns are discussed in the literature surrounding the subject, we examined articles published in IEEE Security and Privacy, a magazine targeted towards a general, technically-oriented readership spanning both academia and industry. Our investigation of the intersection between the ethical and technological dimensions of privacy and security is structured as a bibliometric analysis. Our dataset covers all articles published in IEEE Security and Privacy since its inception in 2003 to February 06, 2014 . This venue was chosen not only because of its target readership, but also because a preliminary search of keywords related to ethics, privacy, and security topics in the ISI Web of Knowledge and IEEE Xplore indicated that IEEE Security and Privacy has published a preponderance of articles matching those topics. In fact, our search returned two-fold more articles for IEEE Security and Privacy than the next most prolific venue. These reasons, coupled with the fact that both academia and industry are well-represented in the authorship of articles makes IEEE Security and Privacy an excellent candidate for bibliometric analysis. Our analysis examines the ways articles in IEEE Security and Privacy relate ethics to information technology. Such articles can influence the development of law, policy and the future of information technology ethics. We employed thematic and JK-biplot analyses of content relating privacy and ethics and found eight dominant themes as well as the inter-theme relationships. Authors and institutional affiliations were examined to discern whether centers of research activity and/or authors dominated the overall field or thematic areas. Results suggest avenues for future work in critical areas, especially for closing present gaps in the coverage of ethics and information technology privacy and security themes particularly in the areas of ethics and privacy awareness. Keywords: Ethics Privacy Education

Tse J, Schrader DE,  Ghosh D, Liao T, Lundie D (2015) A bibliometric analysis of privacy and ethics in IEEE Security and Privacy. Ethics and Information Technology. 17(2) pp 153-163 Publisher: http://link.springer.com/article/10.1007%2Fs10676-015-9369-6

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Qualitative research ethics on the spot: Not only on the desktop (Papers: Christine Øye et al 2015)

Abstract BACKGROUND: The increase in medical ethical regulations and bureaucracy handled by institutional review boards and healthcare institutions puts the researchers using qualitative methods in a challenging position. METHOD: Based on three different cases from three different research studies, the article explores and discusses research ethical dilemmas. OBJECTIVES AND ETHICAL CONSIDERATIONS: First, and especially, the... More

Abstract BACKGROUND: The increase in medical ethical regulations and bureaucracy handled by institutional review boards and healthcare institutions puts the researchers using qualitative methods in a challenging position. METHOD: Based on three different cases from three different research studies, the article explores and discusses research ethical dilemmas. OBJECTIVES AND ETHICAL CONSIDERATIONS: First, and especially, the article addresses the challenges for gatekeepers who influence the informant's decisions to participate in research. Second, the article addresses the challenges in following research ethical guidelines related to informed consent and doing no harm. Third, the article argues for the importance of having research ethical guidelines and review boards to question and discuss the possible ethical dilemmas that occur in qualitative research. DISCUSSION AND CONCLUSION: Research ethics must be understood in qualitative research as relational, situational, and emerging. That is, that focus on ethical issues and dilemmas has to be paid attention on the spot and not only at the desktop. KEYWORDS: Do no harm; gatekeeper; informed consent; qualitative research; relational and situational ethics; research ethics

Øye C, Sørensen NØ, Glasdam S (2015) Qualitative research ethics on the spot: Not only on the desktop. Nursing Ethics 0969733014567023, first published on February 9, 2015 Publisher (Electronic pre publication version): http://nej.sagepub.com/content/early/2015/01/28/0969733014567023.long

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Deception of children in research (Papers: Merle Spriggs & Lynn Gillam 2013)

Abstract: The aim of this article is to draw attention to an under-recognised but ethically important phenomenon involving the deception of children in research. The type of deception we are referring to is not planned deception that is part of the research design. Instead it is deception that occurs in... More

Abstract: The aim of this article is to draw attention to an under-recognised but ethically important phenomenon involving the deception of children in research. The type of deception we are referring to is not planned deception that is part of the research design. Instead it is deception that occurs in individual cases where parents ask researchers not to reveal something about the research to their child. Our focus is children who do not have ultimate decisional authority—children around the ages of 7–14 years old who may have the cognitive capacity to understand but not to consent for themselves; children whose agreement is required but not sufficient to authorise research. We provide three illustrative scenarios for analysis. Then, we identify circumstances in which non-disclosure might be justified and set out reasons why providing information to non-competent children is ethically required. On this basis, we argue that non-planned deception requested by parents is very unlikely to be ethically acceptable. Finally, we recommend that guidelines should (a) require researchers to consider what to do if parents do not want to disclose information to a child and (b) clarify that the most ethical response is to simply not include that child in the research.

Spriggs, Merle, & Gillam, Lynn. (2015). Deception of children in research. Journal of Medical Ethics. 41:179–182 Publisher: http://jme.bmj.com/content/41/2/179.abstract?sid=ba242ba9-0a7e-44b0-b589-46a9f31e0b4c

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Scientists’ perspectives on consent in the context of biobanking research (Zubin Master, et al 2015)

Published/Released on June 30, 2014 | Posted by Admin on May 12, 2016 | Keywords: , , , , , , , , , , ,

Abstract: Most bioethics studies have focused on capturing the views of patients and the general public on research ethics issues related to informed consent for biobanking and only a handful of studies have examined the perceptions of scientists. Capturing the opinions of scientists is important because they are intimately involved... More

Abstract: Most bioethics studies have focused on capturing the views of patients and the general public on research ethics issues related to informed consent for biobanking and only a handful of studies have examined the perceptions of scientists. Capturing the opinions of scientists is important because they are intimately involved with biobanks as collectors and users of samples and health information. In this study, we performed interviews with scientists followed by qualitative analysis to capture the diversity of perspectives on informed consent. We found that the majority of scientists in our study reported their preference for a general consent approach although they do not believe there to be a consensus on consent type. Despite their overall desire for a general consent model, many reported several concerns including donors needing some form of assurance that nothing unethical will be done with their samples and information. Finally, scientists reported mixed opinions about incorporating exclusion clauses in informed consent as a means of limiting some types of contentious research as a mechanism to assure donors that their samples and information are being handled appropriately. This study is one of the first to capture the views of scientists on informed consent in biobanking. Future studies should attempt to generalize findings on the perspectives of different scientists on informed consent for biobanking.

Master Z, Campo-Engelstein L, Caulfield T (2015) Scientists' perspectives on consent in the context of biobanking research. European Journal of Human Genetics. 23(5): 569-574. doi: 10.1038/ejhg.2014.143 NCBI (Free access): http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4402622/ Publisher (Free access): http://www.nature.com/ejhg/journal/v23/n5/full/ejhg2014143a.html

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Clarifying ethical responsibilities in paediatric biobanking (Papers Merle Spriggs & Craig L. Fry)

ABSTRACT Background: The creation of biobanks for storage of human specimens and use in health and medical research is expanding globally. Biobanks hold significant potential to facilitate such research. However, important ethical questions arise, particularly in the pediatric setting, in relation to consent, future use, and the balance of benefits... More

ABSTRACT Background: The creation of biobanks for storage of human specimens and use in health and medical research is expanding globally. Biobanks hold significant potential to facilitate such research. However, important ethical questions arise, particularly in the pediatric setting, in relation to consent, future use, and the balance of benefits against potential harms. To date, these ethical issues have been undertheorized and under-researched in the biobanks domain. The aim of this study was to examine stakeholder attitudes regarding the ethical responsibilities of researchers, biobank custodians, Human Research Ethics Committees (HRECs), research institutions, and parents. Methods: A qualitative study using semistructured interviews with a purposive sample of key informants (n = 14) with relevant expertise was conducted. Participants were interviewed about their pediatric biobank experiences, the main ethical issues observed as an HREC member, researcher, or custodian, and future needs. Results: Participants expressed concerns about consent processes in the biobanking context, including issues regarding the provision of information, level of understanding, voluntariness, and the point at which children have a role or can consent for themselves. Other major issues raised were biobank quality management, the return of results, and the idea of human tissue as a scarce precious resource. Key informants also highlighted uncertainties about the custodianship of biobank samples and reasonable limits on the custodian's role. Conclusions: Pediatric biobanks are a valuable resource, presenting unique opportunities to advance children's health and well-being. Properly run pediatric biobanks entail responsibilities for institutes, custodians, researchers, and research ethics committees. We discuss ethical implications for pediatric biobank policy and practices, as well as future information needs in light of the study findings.

Spriggs, M. & Fry, C. (2015). Clarifying ethical responsibilities in paediatric biobanking. AJOB Empirical Bioethics DOI:10.1080/23294515.2015.1049718 http://www.tandfonline.com/eprint/QDVEzAwZsTqT9QkwvBjB/full xxxx

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Using the Emanuel et al. framework to assess ethical issues raised by a biomedical research ethics committee in South Africa (Papers: Joyce Mahlako Tsoka-Gwegweni and Douglas Wassenaar 2014)

Abstract: The Emanuel, Wendler, and Grady framework was designed as a universal tool for use in many settings including developing countries. However, it is not known whether the work of African health research ethics committees (RECs) is compatible with this framework. The absence of any normative or empirical weighting of... More

Abstract: The Emanuel, Wendler, and Grady framework was designed as a universal tool for use in many settings including developing countries. However, it is not known whether the work of African health research ethics committees (RECs) is compatible with this framework. The absence of any normative or empirical weighting of the eight principles within this framework suggests that different health RECs may raise some ethical issues more frequently than others when reviewing protocols. We used the Emanuel et al. framework to assess, code, and rank the most frequent ethical issues considered by a biomedical REC during review of research protocols for the years 2008 to 2012. We extracted data from the recorded minutes of a South African biomedical REC for the years 2008 to 2012, designed the data collection sheet according to the Emanuel et al. framework, and removed all identifiers during data processing and analysis. From the 98 protocols that we assessed, the most frequent issues that emerged were the informed consent, scientific validity, fair participant selection, and ongoing respect for participants. This study represents the first known attempt to analyze REC responses/minutes using the Emanuel et al. framework, and suggests that this framework may be useful in describing and categorizing the core activities of an REC. Keywords: Emanuel framework; RECs; South Africa; assessment of ethics review; ethical review framework; health research ethics; research ethics committee review outcomes

Tsoka-Gwegweni JM, Wassenaar DR.(2014) Using the Emanuel et al. Framework to Assess Ethical Issues Raised by a Biomedical Research Ethics Committee in South Africa. Journal of Empirical Research on Human Research Ethics. 9(5):36-45. doi: 10.1177/1556264614553172 Publisher: http://jre.sagepub.com/content/9/5/36.long

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Confidentiality in participatory research: Challenges from one study (Papers: Elmira Petrova et al 2014)

Abstract Aim: This article presents key ethical challenges that were encountered when conducting a participatory qualitative research project with a very specific, small group of nurses, in this case with practice development nurses in Malta. Background: With the small number of nurses employed in practice development roles in Malta, there are... More

Abstract Aim: This article presents key ethical challenges that were encountered when conducting a participatory qualitative research project with a very specific, small group of nurses, in this case with practice development nurses in Malta. Background: With the small number of nurses employed in practice development roles in Malta, there are numerous difficulties of maintaining confidentiality. Poorly constructed interventions by the researcher could have resulted in detrimental effects to research participants and the overall trustworthiness of the research. Generally, ethical guidelines for research exist to reinforce validity of research; however, there is not an established consensus on how these strategies can be utilised in some types of qualitative field work. Research design: The researcher used an exploratory case study methodology. The sample consisted of 10 participants who were interviewed twice using face-to-face interviews, over a period of 2 months. Ethical considerations: The study was ethically reviewed by the University Research Ethics Committee and the Faculty Research Ethics Committee, University of Malta. The participants referred to in this article have been given adequate information about the study and their consent has been obtained. Discussion: Numerous strategies for ensuring confidentiality during recruitment of the participants, during data collection, during transcription and data analysis and during dissemination of research results assisted the researcher in responding to potential and actual ethical issues. Conclusion: This article emphasises the main strategies that can be used to respond to ethical challenges when researching with a small easily identifiable group. The learning discussed here may be relevant to or even transferable to other similar research studies or research contexts. These methods fostered a greater credibility throughout the research process and predisposed the participants to greater trust, and thus, they disclosed their experiences and speak more freely, thus enhancing the quality of the study. Keywords: Confidentiality consent ethics participatory research qualitative research

Petrova E, Dewing J, Camilleri M (2014) Confidentiality in participatory research: Challenges from one study. Nursing Ethics doi: 10.1177/0969733014564909 Publisher: http://nej.sagepub.com/content/early/2014/12/29/0969733014564909.abstract

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Children, Biological Samples, and Broad Consent (Papers: Merle Spriggs 2015)

Published/Released on August 25, 2015 | Posted by Admin on May 7, 2016 | Keywords: , , , , , , , , ,

Abstract: Broad consent for the collection and use of biological samples in research may be ethically appropriate but when children are involved, things are different. Adults who donate their samples may lack detailed information about future research, but they can still give valid consent. They can choose ignorance in the... More

Abstract: Broad consent for the collection and use of biological samples in research may be ethically appropriate but when children are involved, things are different. Adults who donate their samples may lack detailed information about future research, but they can still give valid consent. They can choose ignorance in the interest of supporting valuable research. Alternatively, they can exercise their right to say no and not donate their sample. Children need someone else to make these decisions for them and arguably, when parents make these decisions for their children, the responsibility is greater than when they are making decisions for themselves.

Spriggs, M. & Fry, C. (2015). Children, biological samples and broad consent. American Journal of Bioethics. 15(9): 70-72 Publisher: http://www.tandfonline.com/doi/abs/10.1080/15265161.2015.1062173?journalCode=uajb20

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Untangling research and practice: What Facebook’s “emotional contagion” study teaches us (Papers: Danah Boyd 2015)

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Should we tell children and young people about the positive experience of taking part in clinical trials? (Papers: Merle Spriggs 2015)

Abstract: Should we tell childre... More

Abstract: Should we tell children and young people that they could gain personal benefit from taking part in clinical trials and that they have a moral duty to take part? Should we tell them that they may come to feel “special,” gain “more confidence,” deal more effectively with their disease, and have their lives enriched (Luchtenberg et al. 2015)? Luchtenberg and colleagues (2015) report on young people’s positive experiences of taking part in clinical trials and recommend that professionals give children and young people more information about how research participation“ can affect their life in a positive way” and more information about opportunities to take part. They report that children and young people, between the ages of 10 and 23 years, often feel a moral duty to participate, are often altruistic, and while they may take part in research in the hope of improving their health, they are not necessarily under the “therapeutic misconception.”

Spriggs, M. (2015). Should we tell children and young people about the positive experience of taking part in clinical trials? American Journal of Bioethics. 15(11): 35-36 Publisher: http://www.tandfonline.com/doi/abs/10.1080/15265161.2015.1088976?journalCode=uajb20

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To disclose, or not to disclose? Context matters (Papers: Vasiliki Rahimzadeh, et al 2014)

Abstract: Progress in understanding childhood disease using next-generation sequencing (NGS) portends vast improvements in the nature and quality of patient care. However, ethical questions surrounding the disclosure of incidental findings (IFs) persist, as NGS and other novel genomic technologies become the preferred tool for clinical genetic testing. Thus, the need for... More

Abstract: Progress in understanding childhood disease using next-generation sequencing (NGS) portends vast improvements in the nature and quality of patient care. However, ethical questions surrounding the disclosure of incidental findings (IFs) persist, as NGS and other novel genomic technologies become the preferred tool for clinical genetic testing. Thus, the need for comprehensive management plans and multidisciplinary discussion on the return of IFs in pediatric research has never been more immediate. The aim of this study is to explore the views of investigators concerning the return of IFs in the pediatric oncology research context. Our findings reveal at least four contextual themes underlying the ethics of when, and how, IFs could be disclosed to participants and their families: clinical significance of the result, respect for individual, scope of professional responsibilities, and implications for the healthcare/research system. Moreover, the study proposes two action items toward anticipatory governance of IF in genetic research with children. The need to recognize the multiplicity of contextual factors in determining IF disclosure practices, particularly as NGS increasingly becomes a centerpiece in genetic research broadly, is heightened when children are involved. Sober thought should be given to the possibility of discovering IF, and to proactive discussions about disclosure considering the realities of young participants, their families, and the investigators who recruit them.

Rahimzadeh V, Avard1 D, S'ne´cal K, Knoppers BM and Sinnett D. To disclose, or not to disclose? Context matters. European Journal of Human Genetics (2015) 23, 279–284 Publisher (open access): http://www.nature.com/ejhg/journal/v23/n3/pdf/ejhg2014108a.pdf

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Reflections on ethical dilemmas in working with so-called ‘vulnerable’ and ‘hard-to-reach’ groups: experiences from the Foodways and Futures project (Papers: Karolina Gombert et al 2015)

Abstract: This article reflects on ethical limitations and dilemmas encountered during fieldwork of the Foodways and Futures project (2013–2016). Foodways and Futures is a qualitative action research project aimed at exploring the food choices of former homeless young people (aged 16–25) in Aberdeenshire. In Scotland, where over 13,000 young people... More

Abstract: This article reflects on ethical limitations and dilemmas encountered during fieldwork of the Foodways and Futures project (2013–2016). Foodways and Futures is a qualitative action research project aimed at exploring the food choices of former homeless young people (aged 16–25) in Aberdeenshire. In Scotland, where over 13,000 young people become homeless every year, Foodways and Futures aims to address social injustices as well as the implications of malnutrition in young people. Four interrelated main themes surrounding ethics became apparent during fieldwork: issues of communication, trust, issues with consent forms and power relations. Reflecting on these themes makes it clear that ethical guidelines are not necessarily beneficial for researchers as well as participants, especially if they are part of so-called vulnerable groups. Keywords: Ethics, vulnerable and hard-to-reach groups, action research, young people, food choices, power, trust, consent forms

Gombert K, Douglas F, McArdle K & Carlisle S. Reflections on ethical dilemmas in working with so-called ‘vulnerable’ and ‘hard-to-reach’ groups: experiences from the Foodways and Futures project. Educational Action Research. DOI:10.1080/09650792.2015.1106958 Publisher: http://www.tandfonline.com/doi/abs/10.1080/09650792.2015.1106958

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Best Practices in Psychobiographical Research: Ethical Considerations and Publishing – Supplemental Materials (Papers: J. G. Ponterotto)

Abstract: The purpose of this brief report is to supplement the main article “Best Practices in Psychobiographical Research” with a brief discussion on ethics in psychobiographical research and on the process of publishing psychobiographies. Two ethics best practices discussed are 1) Multidisciplinary Knowledge of Ethical Research Practice, which includes... More

Abstract: The purpose of this brief report is to supplement the main article “Best Practices in Psychobiographical Research” with a brief discussion on ethics in psychobiographical research and on the process of publishing psychobiographies. Two ethics best practices discussed are 1) Multidisciplinary Knowledge of Ethical Research Practice, which includes coverage of Institutional Review Board (IRB) review, informed consent, and highly personal, previously unknown information in the psychobiographical report; and 2) Psychobiographer as Ethical Decision-Maker, which presents a six-step ethical decision-making model to guide researchers. Finally, this Supplemental Report closes with suggestions for publishing one’s psychobiographical report in both journal and book form. Keywords: psychobiography, ethics, qualitative research, publishing psychobiography

Ponterotto JG (2014) Best Practices in Psychobiographical Research: Ethical Considerations and Publishing. Qualitative Psychology, 1(1), pp77-90. Supplementary notes

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Visual Methodologies: Special research ethics edition (Papers)

"This special issue on ethical issues in visual research arose from our collective observation that there is an urgent need for researchers to share and reflect upon stories about the ethical challenges they are facing in their research, including how they have navigated the formal procedural ethics review process... More

"This special issue on ethical issues in visual research arose from our collective observation that there is an urgent need for researchers to share and reflect upon stories about the ethical challenges they are facing in their research, including how they have navigated the formal procedural ethics review process and how they have identified and responded to ethical challenges in their research practice. Our approach in this special issue has been to call for tales from the field that raise new questions and highlight concerns within the context of real and ongoing research rather than attempt to derive solutions to ethical problems in an abstract or decontextualized way. The overall collection is therefore one that highlights the importance of good descriptive self-reflexive accounts of ethical and methodological issues, especially in terms of what is useful for other visual researchers and also for members of research ethics boards or committees (REB/REC)."

Click here to access this edition.

In this edition:

Editorial: Visual methods and ethics: Stories from the field Susan M. Cox, Marilys Guillemin, Jenny Waycott, Deborah Warr 1-3

Re/formulating Ethical Issues for Visual Research Methods Jenny Waycott, Marilys Guillemin, Deborah Joy Warr, Susan Cox, Sarah Drew, Catherine Howell 4-15

Ethical issues in the use of video observations with people with advanced dementia and their caregivers in nursing home environments Gloria Puurveen, Alison Phinney, Susan Cox, Barbara Purvest 16-26

Adding the agentic capacities of visual materials to visual research ethics Kim McLeod, Marilys Guillemin 27-42

Visual Embodiment of Psychosis: Ethical Concerns in Performing Difficult Experiences Katherine Mary Boydell, Carmela Solimine, Siona Siona 43-52

Beneficence and contemporary art: when aesthetic judgment meets ethical judgment Barbara Ruth Bolt 53-66

Making the visual invisible: exploring creative forms of dissemination that respect anonymity but retain impact Dawn Mannay 67-76

Poor places, powerful people? Co-producing cultural counter-representations of place. Ellie Byrne, Eva Elliott, Gareth Williams 77-85

Digital Ethnographic Techniques in Domestic Spaces: Notes on Methods and Ethics Bjorn Nansen, Jenny Kennedy, Michael Arnold, Martin Gibbs, Rowan Wilken 86-97

Digital storytelling, image-making and self-representation: Building digital literacy as an ethical response for supporting Aboriginal young peoples’ digital identities Fran Edmonds, Michelle Evans, Scott McQuire, Richard Chenhall

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Reconsidering the ethics of sham interventions in an era of emerging technologies (Papers: Sophie Niemansburg 2015)

Abstract: Our aim was to ethically evaluate the arguments in favor and against sham interventions, as presented in literature. Two developments underscore the need to reconsider the ethics of sham interventions. First, the number of clinical trials investigating interventions in the field of regenerative medicine are increasing, in which the... More

Abstract: Our aim was to ethically evaluate the arguments in favor and against sham interventions, as presented in literature. Two developments underscore the need to reconsider the ethics of sham interventions. First, the number of clinical trials investigating interventions in the field of regenerative medicine are increasing, in which the choice for a placebo requires an invasive intervention. Second, the increased awareness of the lack of systematic research in surgery stresses the need to discuss the necessity and acceptability of sham-controlled clinical trials. A systematic search in Medline was performed, of which 104 articles were considered relevant. Arguments in favor of a sham controlled design are that it increases the scientific validity and the benefits to society while at the same time the risks and harm can be acceptable. Arguments against sham controls include that they pose unacceptable risks to participants, present difficulties with informed consent, that the use of deceptive tactics is unethical, and that the feasibility of such controls is compromised because of a lack of public support. None of the published literature fully rejects sham interventions, and many regard sham interventions acceptable provided the conditions of scientific necessity, reasonable risks, and valid informed consent are fulfilled. Further debate should no longer address whether a sham control is ethically acceptable but rather when these conditions are fulfilled.

Niemansburg SL, van Delden JJ, Dhert WJ and Bredenoord AL (2015) Reconsidering the ethics of sham interventions in an era of emerging technologies. Journal of the Society of University Surgeons. 157(4), pp801-10. doi: 10.1016/j.surg.2014.12.001 ScienceDirect: http://www.sciencedirect.com/science/article/pii/S0039606014007867

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Ethics in Evaluating a Sociotechnical Intervention With Socially Isolated Older Adults (Jenny Waycott et al 2015)

Abstract: The purpose of this article is to consider how ethical principles can inform the effective design and implementation of technology-based interventions that aim to promote the well-being of socially isolated older adults. We evaluated a new iPad application with small groups of older adults. In this article, we reflect... More

Abstract: The purpose of this article is to consider how ethical principles can inform the effective design and implementation of technology-based interventions that aim to promote the well-being of socially isolated older adults. We evaluated a new iPad application with small groups of older adults. In this article, we reflect on the ethical issues encountered at each stage of the research process. Drawing on the ethical principles of beneficence, research merit and integrity, justice, and respect, we identify key issues to consider in the future design and implementation of social isolation interventions that use new technologies. Key issues include (a) providing sufficient support to facilitate ongoing social interactions, (b) managing older adults' expectations, (c) providing encouragement without coercion, and (d) responding to individual needs. We conclude that it is important to report on ethical challenges incurred when evaluating social isolation interventions to inform future research in this important area. Keywords ethics / moral perspectives; older people; participation, social; technology; vulnerable populations

Waycott J, Morgans A, Pedell S, Ozanne E, Vetere F, Kulik L and Davis H (2015) Ethics in Evaluating a Sociotechnical  Intervention With Socially Isolated Older  Adults. Qualitative Health Research. 1518-28. doi: 10.1177/1049732315570136. Publisher: http://qhr.sagepub.com/content/25/11/1518.long

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E-recruitment based clinical research: notes for Research Ethics Committees/Institutional Review Boards (Papers: Pietro Refolo et al 2015)

Abstract: Patient recruitment is a critical point of today's clinical research. Several proposals have been made for improving it, but the effectiveness of these measures is actually uncertain. The use of Internet (e-recruitment) could represent a great chance to improve patient enrolment, even though the effectiveness of this implementation is... More

Abstract: Patient recruitment is a critical point of today's clinical research. Several proposals have been made for improving it, but the effectiveness of these measures is actually uncertain. The use of Internet (e-recruitment) could represent a great chance to improve patient enrolment, even though the effectiveness of this implementation is not so evident. E-recruitment could bring some advantages, such as better interaction between clinical research demand and clinical research supply, time and resources optimization, and reduction of data entry errors. It raises some issues too, such as sampling errors, validity of informed consent, and protection of privacy. Research Ethics Committees/Institutional Review Boards should consider these critical points. The paper deals with Internet recruitment for clinical research. It also attempts to provide Research Ethics Committees/Institutional Review Boards with notes for assessing e-recruitment based clinical protocols.

Refolo P, Sacchini D, Minacori, Dalosio V and Spagnolo A G (2015) E-recruitment based clinical research: notes for Research Ethics Committees/Institutional Review Boards. European Review for Medical & Pharmacological Sciences. Vol. 19 Issue 5, pp800-804 Publisher (Free download): http://www.europeanreview.org/article/8625

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A decision tool to guide the ethics review of a challenging breed of emerging genomic projects (Yann Joly et al 2016)

Abstract: Recent projects conduct... More

Abstract: Recent projects conducted by the International Cancer Genome Consortium (ICGC) have raised the important issue of distinguishing quality assurance (QA) activities from research in the context of genomics. Research was historically defined as a systematic effort to expand a shared body of knowledge, whereas QA was defined as an effort to ascertain whether a specific project met desired standards. However, the two categories increasingly overlap due to advances in bioinformatics and the shift toward open science. As few ethics review policies take these changes into account, it is often difficult to determine the appropriate level of review. Mislabeling can result in unnecessary burdens for the investigators or, conversely, in underestimation of the risks to participants. Therefore, it is important to develop a consistent method of selecting the review process for genomics and bioinformatics projects. This paper begins by discussing two case studies from the ICGC, followed by a literature review on the distinction between QA and research and a comparative analysis of ethics review policies from Canada, the United States, the United Kingdom, and Australia. These results are synthesized into a novel two-step decision tool for researchers and policymakers, which uses traditional criteria to sort clearly defined activities while requiring the use of actual risk levels to decide more complex cases.

Joly Y, So D, Osien G, Crimi L, Bobrow M, Chalmers D, Wallace S E, Zeps N and Knoppers B (2016) A decision tool to guide the ethics review of a challenging breed of emerging genomic projects. European Journal of Human Genetics advance. Online publication. doi:10.1038/ejhg.2015.279 Publisher: http://www.nature.com/ejhg/journal/vaop/ncurrent/full/ejhg2015279a.html ResearchGate: https://www.researchgate.net/publication/291341753_A_decision_tool_to_guide...

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Addressing Global Data Sharing Challenges (Papers: George C. Alter Mary Vardigan 2015)

Abstract: This issue of the Journal of Empirical Research on Human Research Ethics highlights the ethical issues that arise when researchers conducting projects in low- and middle-income countries seek to share the data they produce. Although sharing data is considered a best practice, the barriers to doing so are... More

Abstract: This issue of the Journal of Empirical Research on Human Research Ethics highlights the ethical issues that arise when researchers conducting projects in low- and middle-income countries seek to share the data they produce. Although sharing data is considered a best practice, the barriers to doing so are considerable and there is a need for guidance and examples. To that end, the authors of this article reviewed the articles in this special issue to identify challenges common to the five countries and to offer some practical advice to assist researchers in navigating this “uncharted territory,” as some termed it. Concerns around informed consent, data management, data dissemination, and validation of research contributions were cited frequently as particularly challenging areas, so the authors focused on these four topics with the goal of providing specific resources to consult as well as examples of successful projects attempting to solve many of the problems raised. Keywords: Data sharing; Informed consent; Open science; Privacy of human subjects; Data repositorie

Alter GC and Vardigan M (2015) Addressing Global Data Sharing Challenges Journal of Empirical Research on Human Research Ethics. Vol. 10(3) 317–323 DOI 10.1177/1556264615591561 Publisher (Free access): http://jre.sagepub.com/content/10/3/317 ResearchGate: https://www.researchgate.net/publication/281195278_Addressing_Global_Data_Sharing_Challenges

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From research integrity to researcher integrity: issues of conduct, competence and commitment (Papers: Sarah Jane Banks 2015)

Paper presented at Academy of Social Sciences and British Sociological Association event, Virtue Ethics in the Practice and Review of Social Science Research, London, 1st May 2015 Abstract: This presentation will discuss the concept of researcher integrity in the context of the rapidly growing concern with research integrity. I will... More

Paper presented at Academy of Social Sciences and British Sociological Association event, Virtue Ethics in the Practice and Review of Social Science Research, London, 1st May 2015 Abstract: This presentation will discuss the concept of researcher integrity in the context of the rapidly growing concern with research integrity. I will explore researcher integrity as a complex quality of character or ‘virtue’, which has a focus on the motivations and commitments of the researcher as a practitioner in the research community. This contrasts with the common focus on research integrity, which usually considers the integrity of the research practice – although clearly the integrity of the researcher and of the research organisation influence the conduct of research. I will discuss what is meant by researcher integrity, including weak and strong versions of the concept (conduct according to extant standards, versus reflexive commitment to ideals of what research should be at its best), and how character-based approaches to ethics complement and extend conduct-focussed, regulatory approaches. Whilst the concept of ‘character’ is disputed, and there are critiques of ‘character-building’ education programmes, there are also equally valid challenges to regulatory, conduct-focussed approaches to ethics.

Banks S J (2015) From research integrity to researcher integrity: issues of conduct, competence and commitment. In: Virtue Ethics in the Practice and Review of Social Science Research, May 1, 2015, BSA meeting rooms, London SW6 2PY. Conference page: https://www.acss.org.uk/developing-generic-ethics-principles-social-science/current... ResearchGate: https://www.researchgate.net/publication/280943595_From_research_integrity_to_researcher...

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Big Data, Little Individual: Considering the Human Side of Big Data (Michael N. Karim et al 2015)

Abstract: Guzzo, Fink, King, Tonidandel, and Landis (2015) provide a clear overview of the implications of conducting research using big data. One element we believe was overlooked, however, was an individual-level perspective on big data; that is, what impact does this sort of data collection have on the individuals being... More

Abstract: Guzzo, Fink, King, Tonidandel, and Landis (2015) provide a clear overview of the implications of conducting research using big data. One element we believe was overlooked, however, was an individual-level perspective on big data; that is, what impact does this sort of data collection have on the individuals being studied? As psychologists, the ethics and impact of big data collection from workers should be at the forefront of our minds. In this reply, we use years of research on electronic monitoring and tracking to provide evidence that an individual-level perspective is an essential part of the discussion surrounding industrial–organizational psychology and big data. Specifically, we examine electronic performance monitoring (EPM) literature to identify how the widespread, pervasive collection of employee data affects employees’ attitudes and behaviors.

Karim M N, Willford J C and Behrend T S (2015). Big Data, Little Individual: Considering the Human Side of Big Data. Industrial and Organizational Psychology, 8(04), pp 527-533. doi:10.1017/iop.2015.78. Publisher: http://journals.cambridge.org/action/displayAbstract... ResearchGate: https://www.researchgate.net/publication/289129002_Big_Data_Little_Individual_Considering...

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Using video in childbirth research: Ethical approval challenges (Papers: J. Davis Harte et al 2015)

Abstract: Conducting video-research in birth settings raises challenges for ethics review boards to view birthing women and research-midwives as capable, autonomous decision-makers. This study aimed to gain an understanding of how the ethical approval process was experienced and to chronicle the perceived risks and benefits. The Birth Unit Design project was a... More

Abstract: Conducting video-research in birth settings raises challenges for ethics review boards to view birthing women and research-midwives as capable, autonomous decision-makers. This study aimed to gain an understanding of how the ethical approval process was experienced and to chronicle the perceived risks and benefits. The Birth Unit Design project was a 2012 Australian ethnographic study that used video recording to investigate the physical design features in the hospital birthing space that might influence both verbal and non-verbal communication and the experiences of childbearing women, midwives and supporters. Six women, 11 midwives and 11 childbirth supporters were filmed during the women's labours in hospital birth units and interviewed 6 weeks later. Keywords: Australian ethical process, birth unit design, childbirth, ethical approval challenges, midwifery, video ethnograph women’s experiences of labour and birth

Harte JD, Homer CS, Sheehan A, Leap N, Foureur M. (2015) Using video in childbirth research: Ethical approval challenges. Nursing Ethics. 2015 Jul 24. pii: 0969733015591073 ResearchGate: https://www.researchgate.net/publication/280318442_Using_video_in_childbirth... Publisher: http://nej.sagepub.com/content/early/2015/07/22/0969733015591073.abstract

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The vulnerable object of Indigenous research ethics (Papers: Emma Kowal 2014)

Excerpt: The origin story of Indigenous health research ethics, like many tales of regulation, begins in a meeting room. In this case it was the Araluen Centre, Alice Springs in 1986, the site of the first conference on Aboriginal health organized by the National Health and Medical Research Council (NHMRC)... More

Excerpt: The origin story of Indigenous health research ethics, like many tales of regulation, begins in a meeting room. In this case it was the Araluen Centre, Alice Springs in 1986, the site of the first conference on Aboriginal health organized by the National Health and Medical Research Council (NHMRC) and the newly established Menzies School of Health Research. At that point, research ethics review was still in its institutional infancy. Although the first Statement on Human Experimentation was published by the NHMRC in the mid-1960s, it was not until 1973 that ethics committees were first mentioned, at which time there were few in existence. Only in 1985 did the NHMRC require that all human research be approved by an ethics committee. The final day of that Alice Springs conference was famously ‘taken over’ by Aboriginal people who tabled a list of 87 recommendations, foremost among them the need for separate ethical guidelines for Indigenous health research (Humphery 2002). The first guidelines followed in 1991, followed by the most recent version in 2003 (which is currently under review). Those events in the mid-1980s set the pattern for a separate system of Indigenous health research running parallel to mainstream research. Researchers working in Indigenous health tend to do it exclusively from the start of their career. They develop expertise in the language and processes of the field. Those outside the established groups of Indigenous health researchers are likely to intentionally exclude Indigenous research participants to avoid being drawn in to the Indigenous- specific process of NHMRC grant review.

Kowal Emma (2014) The vulnerable object of Indigenous research ethics. The Australian Journal of Anthropology 25 (3): 390-392 Publisher: http://onlinelibrary.wiley.com/doi/10.1111/taja.12109_9/abstract

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Research ethics training on place-based communities and cultural groups (Dianne Quigley, et al 2015)

Abstract: Funded by the National Science Foundation’s Ethics Education in Science and Engineering program, the Northeast Ethics Education Partnership (NEEP) has developed and implemented expanded human subjects training for graduate student researchers and faculty engaging with individuals and groups representing place-based communities and cultural groups. This paper reports on the... More

Abstract: Funded by the National Science Foundation’s Ethics Education in Science and Engineering program, the Northeast Ethics Education Partnership (NEEP) has developed and implemented expanded human subjects training for graduate student researchers and faculty engaging with individuals and groups representing place-based communities and cultural groups. This paper reports on the importance of training graduate students in a series of short courses in environmental science, environmental engineering, and related fields including environmental studies, with an emphasis on research ethics involving place-based communities, cultural competence, and community-based research. New course content, recruitment, implementation strategies, and outcomes for this training effort at the two partnering universities are provided for this initiative Keywords Research ethics Group protections Cultural competence Culturally appropriate research Community-based environmental research

Quigley D, Sonnenfeld D, Brown P, Silka L, He L and Tian Q (2015) Research ethics training on place-based  communities and cultural groups. Journal of Environmental Studies and Sciences. DOI: 10.1007/s13412-015-0236-x . pp 1-11 Publisher: http://link.springer.com/article/10.1007%2Fs13412-015-0236-x

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When the Anths Come Marching In (Papers: Michelle Trudgett and Susan Page 2014)

Excerpt: This essay provides a f... More

Excerpt: This essay provides a first-hand account of why it is important to have Indigenous representation on Human Research Ethics Committees (HRECs), and more importantly why some research simply should not go ahead. Collectively we have 10 years experience serving on HRECs, extensive Indigenous Higher Education research, as well as our lived experience as Indigenous Australians. Despite such experience and expertise, we find ourselves too often in the firing lines of unhappy researchers whose breathtaking sense of entitlement underlines their claims to ‘know’ a particular community. As a noted Native American scholar notes in relation research on Indigenous peoples: We have been observed, noted, taped, and videoed. Our behaviors have been recorded in every possible way known to Western Science, and I suppose we could learn to live with this if we had not become imprisoned in the anthropologist’s words. The language that anthropologists use to explain us traps us in linguistic cages because we must explain our ways through alien hypothetical constructs and theoretical frameworks (King 2012: 207).

Trudgett M and Page S (2014) When the Anths Come Marching In. The Australian Journal of Anthropology 25 (3): 388-390 Publisher: http://onlinelibrary.wiley.com/doi/10.1111/taja.12109_8/abstract

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Ethics and politics (Papers: David Trigger 2014)

Excerpt: The moral case for ethical oversight in relation to social research is reasonable but the politics of assessments remains largely unaddressed. The purpose as set out in the National Statement on Ethical Conduct in Human Research is that participants are accorded respect and protection and that research is fostered that... More

Excerpt: The moral case for ethical oversight in relation to social research is reasonable but the politics of assessments remains largely unaddressed. The purpose as set out in the National Statement on Ethical Conduct in Human Research is that participants are accorded respect and protection and that research is fostered that benefits ‘the community’. While university ethics committees are broadly made up of academics and others of good will it is the complexity of deciding how projects achieve these purposes that provokes difficulty. In my dealings with ethics committees in two Australian universities over some 20 years it has required considerable effort to ensure that appropriate oversight for projects has not been confounded by committee members confusing their own personal political positions with decisions about approving particular studies.

Trigger D (2014) Ethics and politics. The Australian Journal of Anthropology 25 (3): 386-388 Publisher: http://onlinelibrary.wiley.com/doi/10.1111/taja.12109_7/abstract?userIsAuthenticated=false&deniedAccessCustomisedMessage=

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The Ethics Trapeze (Papers: Will C. van den Hoonaard 2006)

Abstract: This article constitutes the introduction to a collection of essays in volume 4 of JAE, representing an extremely diverse collection of pieces written by authors from equally diverse backgrounds with the purpose of sharing the theoretical and practical issues related to research-ethics, or on ethics more generally. All of... More

Abstract: This article constitutes the introduction to a collection of essays in volume 4 of JAE, representing an extremely diverse collection of pieces written by authors from equally diverse backgrounds with the purpose of sharing the theoretical and practical issues related to research-ethics, or on ethics more generally. All of the articles are fresh contributions to the research-ethics review debate. The 17 authors of the 12 articles come from the United States, South Africa, and Canada. Their disciplinary or research backgrounds include Aboriginal literatures, English literature, English-as-a Second-Language pedagogy, French literature, history, language and literacy, liberal arts, and linguistics – all fields in the cluster of the humanities. The volume also has contributions from social work, sociology, and speech pathology. The world of research-ethics review has become so pervasive that it invades all areas of research: it does not respect disciplinary boundaries. The articles in this special volume represent, in short, a microscope of the research world. Key words: ethics in research humanities and ethics research-ethics review

van den Hoonaard, Will C (2006) The Ethics Trapeze. Journal of Academic Ethics. 4(1) pp 1-10 Publisher: http://link.springer.com/article/10.1007%2Fs10805-006-9026-0

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Human research ethics committees: Beyond critique to participation (Papers: Simon Batterbury 2014)

Excerpt: There is frequent criticism by social scientists of Human Research Ethics Committees (HREC). They are accused of ‘ethics creep’, having expanded from their earliest focus in the medical and veterinary sciences following a 1974 ruling in the USA (1985 in Australia) (Haggerty 2004; Dyer and Demeritt 2009). Ethics committees... More

Excerpt: There is frequent criticism by social scientists of Human Research Ethics Committees (HREC). They are accused of ‘ethics creep’, having expanded from their earliest focus in the medical and veterinary sciences following a 1974 ruling in the USA (1985 in Australia) (Haggerty 2004; Dyer and Demeritt 2009). Ethics committees now review any university research involving human ‘subjects’ (Borenstein 2008). Dissatisfaction about the practice of ethics review is especially strong in anthropology, where it is often hard to specify in advance what will be done in a given project and participants are often already known to the researcher (Cowlishaw 2013). Ethnography’s ‘. . .immersive and exploratory nature’ is difficult to predict or constrain in advance of fieldwork (Chenhall et al. 2011: 17). Researchers dislike being forced by their institutions, which may be running scared of lawsuits or costly insurance claims for projects-gone-wrong, to justify and specify their work (Cowlishaw 2013).

Batterbury S (2014) Human research ethics committees: Beyond critique to participation. The Australian Journal of Anthropology 25 (3): 385-386 Publisher: http://onlinelibrary.wiley.com/doi/10.1111/taja.12109_6/abstract Open access: https://minerva-access.unimelb.edu.au/handle/11343/45251

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Consent and confidentiality in the light of recent demands for data sharing (Papers: Garrath Williams and Iris Pigeot )

Abstract: Many attempts have been made to formalize ethical requirements for research. Among the most prominent mechanisms are informed consent requirements and data protection regimes. These mechanisms, however, sometimes appear as obstacles to research. In this opinion paper, we critically discuss conventional approaches to research ethics that emphasize consent and... More

Abstract: Many attempts have been made to formalize ethical requirements for research. Among the most prominent mechanisms are informed consent requirements and data protection regimes. These mechanisms, however, sometimes appear as obstacles to research. In this opinion paper, we critically discuss conventional approaches to research ethics that emphasize consent and data protection. Several recent debates have highlighted other important ethical issues and underlined the need for greater openness in order to uphold the integrity of health-related research. Some of these measures, such as the sharing of individual-level data, pose problems for standard understandings of consent and privacy. Here, we argue that these interpretations tend to be overdemanding: They do not really protect research subjects and they hinder the research process. Accordingly, we suggest another way of framing these requirements. Individual consent must be situated alongside the wider distribution of knowledge created when the actions, commitments, and procedures of researchers and their institutions are opened to scrutiny. And instead of simply emphasizing privacy or data protection, we should understand confidentiality as a principle that facilitates the sharing of information while upholding important safeguards. Consent and confidentiality belong to a broader set of safeguards and procedures to uphold the integrity of the research process. Keywords: Data protection; Ethical review; Informed consent; Privacy; Research ethics; Trustworthiness

Williams G & Pigeot I (2016) Consent and confidentiality in the light of recent demands for data sharing. Biometrical Journal. doi: 10.1002/bimj.201500044 Publisher: http://onlinelibrary.wiley.com/doi/10.1002/bimj.201500044/abstract

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Rethinking Vulnerability and Research: Defining the Need for a Post-Research Ethics Audit (Papers: Chesmal Siriwardhana 2015)

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Problems with ethics committees (Papers: Martha Macintyre 2014)

Excerpt: Human Research Ethics Committees emerged and have expanded in the context of increasing corporatization and bureaucratization of universities in Australia. Initially devised by academics whose research was predominantly in medicine, government bureaucracy imposed them in 1999–2000 with minimal consultation with researchers in Humanities and Social Sciences. While subsequent revisions... More

Excerpt: Human Research Ethics Committees emerged and have expanded in the context of increasing corporatization and bureaucratization of universities in Australia. Initially devised by academics whose research was predominantly in medicine, government bureaucracy imposed them in 1999–2000 with minimal consultation with researchers in Humanities and Social Sciences. While subsequent revisions have attempted to expand and modify the National Statement so that it accommodates research outside medicine, many of the problems inherent in its first iteration remain. The subject of study is still implicitly a vulnerable, individual patient; the researcher continues to appear in the guise of an authoritative, powerful ‘expert’. These hierarchical roles might reflect medical scientists’ self-perceptions, but they do not fit the sorts of relationships that anthropologists have with the subjects of their research—ideally or actually.

Kohn T (2014) Problems with ethics committees. The Australian Journal of Anthropology 25 (3): 379-381 Publisher: http://onlinelibrary.wiley.com/doi/10.1111/taja.12109_4/abstract

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The Ethical Implications of HCI’s Turn to the Cultural (Papers: Nick Tandavanitj et al)

Abstract: We explore the ethical implications of HCI’s turn to the ‘cultural’. This is motivated by an awareness of how cultural applications, in our case interactive performances, raise ethical issues that may challenge established research ethics processes. We review research ethics, HCI’s engagement with ethics and the ethics of... More

Abstract: We explore the ethical implications of HCI’s turn to the ‘cultural’. This is motivated by an awareness of how cultural applications, in our case interactive performances, raise ethical issues that may challenge established research ethics processes. We review research ethics, HCI’s engagement with ethics and the ethics of theatrical performance. Following an approach grounded in Responsible Research Innovation, we present the findings from a workshop in which artists, curators, commissioners and researchers explored ethical challenges revealed by four case studies. We identify six ethical challenges for HCI’s engagement with cultural applications: transgression, boundaries, consent, withdrawal, data and integrity. We discuss two broader implications of these: managing tensions between multiple overlapping ethical frames; and the importance of managing ethical challenges during and after an experience as well as beforehand. Finally, we discuss how our findings extend previous discussions of Value Sensitive Design in HCI. Categories and Subject Descriptors: H500 [Human-centred computing]: Human Computer Interaction – HCI Theory, Concepts and Models Additional Key Words and Phrases: Art, Performance; Ethics; Uncomfortable Interactions; Discomfort; Consent; Withdrawal; Boundaries; Transgression; Integrity; Blast Theory; Active Ingredient; Urban Angel; Thrill Laboratory; Research in the Wild

Benford S, Greenhalgh C, Anderson B, Jacobs R, Golembewski M, Jirotka M, Carsten Stahl B, Timmermans J, Giannachi G and Adams M (2015) The Ethical Implications of HCI's Turn to the Cultural. ACM Transactions on Computer-Human Interaction, TOCHI 22(5). 24. DOI: 10.1145/2775107 http://dl.acm.org/citation.cfm?id=2775107&utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+TOCHI-currentissue+(ACM+Transactions+on+Computer-Human+Interaction+(TOCHI)-Current+Issue)&preflayout=tabs

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Ethics review and the limited gaze: a plea for an intervention (Papers: Tamara Kohn 2014)

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Review: Carl E. Schneider, The Censor’s Hand: The Misregulation of Human-Subject Research (Papers: Will C. van den Hoonaard 2015 )

Published/Released on January 15, 2015 | Posted by Admin on March 11, 2016 | Keywords: , , , , ,

Abstract: The Censor’s Hand invites us to explore the murky side of formal research-ethics review in the United States, as embodied in “Institutional Review Boards” (IRBs). Amidst some 340 publications and several blogs that have taken formal research-ethics review to task, this book is the seventh detailed monograph on this... More

Abstract: The Censor’s Hand invites us to explore the murky side of formal research-ethics review in the United States, as embodied in “Institutional Review Boards” (IRBs). Amidst some 340 publications and several blogs that have taken formal research-ethics review to task, this book is the seventh detailed monograph on this topic—the others are Robert Klitzman’s The Ethics Police? (2015), Zachary Schrag’s Ethical Imperialism (2010), Laura Stark’s Behind Closed Doors (2011), and my own works, Walking the Tightrope (2002), The Seduction of Ethics (2011), and The Ethics Rupture (forthcoming). This is a particularly welcome volume. It is the second that comes from the hands of someone in medicine (Schneider is a professor of internal medicine). With surgical precision, The Censor’s Hand lays bare the inner workings and the social context of IRBs.

van den Hoonaard, Will C. (2015) Review: Carl E. Schneider, The Censor’s Hand: The Misregulation of Human-Subject Research. Kennedy Institute of Ethics Journal. 25(4):E-11-E-15 42(1): 25–37. Publisher: https://kiej.georgetown.edu/book-reviews/archive/schneider-2015/

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Auditing ethics committees (Papers: Gillian Cowlishaw 2014)

Published/Released on December 12, 2014 | Posted by Admin on March 10, 2016 | Keywords: , , , , , ,

Excerpt: The growth in bureaucratic oversight of research has caused growing disquiet internationally. A critical literature from the UK, the USA and elsewhere details the origins and negative impact of processes that often conflict with fundamental principles of social science research. Ethics committees’ concerns are based on notions of protecting... More

Excerpt: The growth in bureaucratic oversight of research has caused growing disquiet internationally. A critical literature from the UK, the USA and elsewhere details the origins and negative impact of processes that often conflict with fundamental principles of social science research. Ethics committees’ concerns are based on notions of protecting individuals, especially the researched, from harm. But research into social bodies raises quite different ethical considerations (Simpson 2011). Let us be clear: university ethics committees were not set up to counter bad research practices (Badiou 2001). Rather, they have flourished in the wake of the increasing scale and pervasiveness of ‘audit culture’ where the ‘twinned precepts of economic efficiency and good practice are being pursued’ (Strathern 2000: xv). Rather than achieving either aim, the rapid expansion of the power and reach of Australian HRECs exemplifies the way audit culture ‘beckon[s] a new form of coercive and authoritarian governmentality’ (Shore and Wright 1999: 557). To protect original, critical, engaged ethnographic research we need to establish the inappropriateness of these committees, by showing the way their practices contradict the principles of good ethnographic research.2 Strathern’s responses of ‘anxiety and small resistances’ to this ‘culture in the making’ are ineffective (Strathern 2000: xiv).

Cowlishaw G (2014) Auditing ethics committees. The Australian Journal of Anthropology 25 (3): 377–379 Publisher: http://onlinelibrary.wiley.com/doi/10.1111/taja.12109_2/abstract

Also see: A new protection policy? (2013) http://insidestory.org.au/a-new-protection-policy/ Free access Less

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A national survey of experiences with ethics review (Papers: Lisa Wynn et al 2014)

Abstract: In 1985 the National Health and Medical Research Council (NHMRC) made its grants for medical research conditional on the receiving institution submitting all human research, whether or not medical and whether or not funded by the NHMRC, for ethics review (NHMRC 2007). However, this NHMRC-induced extension of ethics review... More

Abstract: In 1985 the National Health and Medical Research Council (NHMRC) made its grants for medical research conditional on the receiving institution submitting all human research, whether or not medical and whether or not funded by the NHMRC, for ethics review (NHMRC 2007). However, this NHMRC-induced extension of ethics review to non-medical projects retained the established conceptualisation of research as health and clinical. Over the next two decades, institutions expanded the jurisdiction of their ethics review committees to include methods like ethnography and oral history.

Wynn, L. L., Israel, M., Thomson, C., White, K. L. & Carey-White, L. (2014). A national survey of experiences with ethics review. The Australian Journal of Anthropology, 25 (3), 375-377. Publisher: http://onlinelibrary.wiley.com/doi/10.1111/taja.12109_1/abstract

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Ethics review regimes and Australian anthropology (Papers: Lisa Wynn 2014)

Published/Released on December 16, 2014 | Posted by Admin on March 7, 2016 | Keywords: , , , , ,

Excerpt: In 1977, an officer of the American Anthropological Association (AAA) testified that institutional ethics review was ‘inappropriate for ethnographic research’ and argued that ‘the application of the medical model tends to stultify and discourage ethnographic research. . .at no savings in damage to people’ (Wynn 2011: 94). By 2004, the... More

Excerpt: In 1977, an officer of the American Anthropological Association (AAA) testified that institutional ethics review was ‘inappropriate for ethnographic research’ and argued that ‘the application of the medical model tends to stultify and discourage ethnographic research. . .at no savings in damage to people’ (Wynn 2011: 94). By 2004, the organization had a radically different position, stating that the process of cultivating ‘a strong foundation for the ethical conduct of research with human populations. . . should actively involve the researcher and the IRB [institutional review boards, i.e. ethics committees], the researcher and participants, and finally the IRB, the researcher and stakeholders’ (AAA 2004). This historical shift in the AAA’s stance parallels the history of ethics review bureaucracies, which had their origin in clinical research and gradually expanded to encompass other disciplines over the past three decades. As the ethics review regime expanded and swallowed up new disciplines and methodologies, these disciplines were incorporated into new audit structures, and in turn incorporated them into their disciplinary practices.

Wynn L (2014) Ethics review regimes and Australian anthropology. The Australian Journal of Anthropology 25 (3): 373–375 Publisher: http://onlinelibrary.wiley.com/doi/10.1111/taja.12109/abstract

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Research ethics in emerging forms of online learning: Issues arising from a hypothetical study on a MOOC (Papers: Antonella Esposito 2012)

Abstract: This paper is concerned with how research ethics is evolving along with emerging online research methods and settings. In particular, it focuses on ethics issues implied in a hypothetical virtual ethnography study aiming to gain insights on participants experience in an emergent context of networked learning, namely a MOOC... More

Abstract: This paper is concerned with how research ethics is evolving along with emerging online research methods and settings. In particular, it focuses on ethics issues implied in a hypothetical virtual ethnography study aiming to gain insights on participants experience in an emergent context of networked learning, namely a MOOC … Massive Online Open Course. A MOOC is a popular type of online open course, that provides free content and expertise to anyone in the world who wishes to enroll. The p urposes of this article are to briefly outline recent debates on online research ethics approaches and then to explore competing views on ethical decision‑making when researching in a globalized, online and open learning setting. Considering the challenge s of this new elearning inquiry context, issues as the underlying research ethics models, the roles of researcher and participants and the integrity of the research process are discussed in their interplay with the evolving ethos of the ethnographical met hodology being adopted to investigate participants views. Elements drawn from a hypothetical design of a qualitative study are here utilized to identify an empirical instance that shapes and is being shaped by research ethics decisions. The study aims to answer the following question: what are the affordances (opportunities and challenges) of online open courses as they emerge from the participants perspectives? This paper considers the potential operationalization of the above research question and d iscusses both theoretical and methodological issues arising from applying research ethics to this specific case of Internet inquiry. In this sense, ethical approaches in online research contexts as well as main ethical decisions are discussed and justifie d, envisioning a submission to an institutional ethics review board before undertaking the ethnographical study. Topics such as privacy concerns in a public online setting, choice between overt and covert research, researcher as observer or participant, n arrow or loosely defined application of the informed consent and anonymity are outlined, presenting a range of different options. This article intends to show that ethical decisions are an iterative procedure and an integral part of the research design pr ocess. Moreover, it endorses the opportunity to produce localized and contextualized ethical decision‑making. To this end, it takes into account the guidance available (research ethics literature; narratives of ethics procedures applied to empirical case s); the ethics debates within the ethnographical tradition and the nature of the setting being researched (the specific format of the networked learning instance being examined). The discussion here proposed orientates ethical decision‑making towards a n overt and participant research approach, an informed consent intended as a public notice and a consideration of participants both as authors in the online setting and as human subjects embedding unexpected privacy sensitiveness. However, such decision s are considered as many starting points to build a research ethics protocol intended to a degree as a work in progress, in a problem‑solving approach guided by the practical wisdom of participants emerging over time.rch has been fertile in producing stud ies on pedagogical change and innovation through technology in Higher Education Institutions, namely the integration of the social media in pedagogical practice. However, there is a lack of studies on the integration of the social media in the particular field of lectures. In this context, commonly practiced, the teacher faces a wide audience and feels the need to activate mechanisms of direct instruction, for reasons of economy of time and because it is the most dominant pedagogical model. As a result th ere is a communication paradigm 1.0 (one‑way communication, one‑to‑many, low or non‑existent interaction). In this study, exploratory and quantitative in nature, an approach to the thematic of the exploration of the social media in order to upgrade the cognitive communication from 1.0 to 2.0 (many‑to‑many, interaction between all the participants) in lectures was made. On the approach to the problem, we explored a PowerPoint presentation with the integration of the micro blogging tool Twitter, as a basis for addressing the characteristics of cognitive communication 2.0. For data collection a questionnaire was designed, based on literature, and intended to evaluate several dimensions of the resource used, namely: i) pedagogical issues, ii) technologi cal aspects, iii) cognitive learning; iv) interactions in the classroom; v) positive behavior in the classroom and vi) negative behaviour in the classroom. The results indicate that students recognize the potential of this tool in the dimensions asses sed. Twitter integration in PowerPoint allowed the teacher and the students to read each others views and each had the opportunity to contribute to the debate. It also allowed the release of multiple choice questions to the audience, with answers via Twi tter and projection of results via PowerPoint. This way, a true cognitive communication 2.0 took place. Descriptors: Ethics, Ethnography, Electronic Learning, Online Courses, Research Design, Research Methodology, Problem Solving, Expertise, Integrity, Open Education, Internet

Esposito A (2012) Research ethics in emerging forms of online learning: Issues arising from a hypothetical study on a MOOC. Electronic Journal of e-Learning 10(03). ResearchGate: https://www.researchgate.net/publication/270050225_Research_ethics_in_emerging_forms... Publisher: http://ejel.org/volume10/issue3/p286.

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Research subjects’ voices: the missing element in research ethics (Papers: Rebecca Dresser 2015)

Published/Released on May 01, 2015 | Posted by Admin on March 4, 2016 | Keywords: , , , , , ,

Excerpt: "The laws, regulations and ethical guidelines governing human subject research were largely created by professionals. Researchers, physicians, philosophers and lawyers have been the primary advisers in legislative and regulatory proceedings on human research rules. Individuals appointed to governmental and other groups developing and applying research ethics standards are almost always professionals. Although members of the general... More

Excerpt: "The laws, regulations and ethical guidelines governing human subject research were largely created by professionals. Researchers, physicians, philosophers and lawyers have been the primary advisers in legislative and regulatory proceedings on human research rules. Individuals appointed to governmental and other groups developing and applying research ethics standards are almost always professionals. Although members of the general public are sometimes included in research ethics deliberations, they play a minor role. Strikingly, the people who actually know what it is like to be a research subject are rarely part of these activities. Few people with direct experience as research subjects have been involved in the creation and application of human research rules and guidelines. I believe that their lack of involvement has lessened the effectiveness and ethical value of those rules and guidelines. This is because professionals addressing research ethics and oversight have experiences and interests that differ from those of research participants. Professionals conducting research have perspectives related to their research roles, perspectives that can shape their perceptions and judgements. What one writer has called “researcher ethnocentrism” can prevent investigators from seeing ethical problems with the design and conduct of human studies"

Dresser R (2015) Research subjects' voices: the missing element in research ethics. Anaesth Intensive Care 43(3), 289-432. Publisher: http://www.aaic.net.au/Issue/?V=43&I=3&T=CNTX

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The price of deceiving your future employees (Papers: Mark Israel et al 2016)

Excerpt "Those of us who grew up reading Mark Twain will remember the story of The Prince and the Pauper. In Twain’s book, the future English King Edward VI swaps places with a poor boy in order to move unrecognised among his future subjects. The book has spawned a variety of different versions. The latest enactment may be in a New Zealand university. According to the New Zealand Herald, the preferred candidate for the position of vice-chancellor at Lincoln University interviewed 20 staff while posing as a visiting academic preparing a report. During the interviews, the newspaper claims that Prof. Robin Pollard collected data about concerns academics had about the university, only revealing his identity by email after the interviews had been completed. The project did not seek ethics review from either the visiting professor’s home university in the United Kingdom or Lincoln University but may have been approved by... More

Excerpt "Those of us who grew up reading Mark Twain will remember the story of The Prince and the Pauper. In Twain’s book, the future English King Edward VI swaps places with a poor boy in order to move unrecognised among his future subjects. The book has spawned a variety of different versions. The latest enactment may be in a New Zealand university. According to the New Zealand Herald, the preferred candidate for the position of vice-chancellor at Lincoln University interviewed 20 staff while posing as a visiting academic preparing a report. During the interviews, the newspaper claims that Prof. Robin Pollard collected data about concerns academics had about the university, only revealing his identity by email after the interviews had been completed. The project did not seek ethics review from either the visiting professor’s home university in the United Kingdom or Lincoln University but may have been approved by Lincoln University’s Council. Ethics review is mandatory for all research conducted on university students or staff in New Zealand. University codes of ethics deem them vulnerable or exploitable persons given the conflict of interest and unequal power relations. If it is true that Prof. Pollard conducted research in this way, such a scheme must have seemed attractive to the incoming university boss. Academic leaders may find themselves isolated in the top position and there are significant advantages in opening up multiple lines of communication with your colleagues throughout an organisation. Academics who might not divulge their thoughts to senior management might reveal their views to a visiting academic making the use of deception seductively attractive in these circumstances."

Israel, M, Poata Smith, B & Tolich, M (2016) The price of deceiving your future employees. Tertiary Update: Weekly News from The New Zealand Tertiary Education Union – Te Hautū Kahurangi O Aotearoa 2 March http://teu.ac.nz/2016/03/the-price-of-deceiving/

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Ethics, collective health, qualitative health research and social justice (Papers: Iara Guerriero and Fernando Peñaranda 2015)

Abstract: The scientific field is characterized by the disputes about the delimitation of the field problems, methods and theories that can be considered scientific. The recognition that it is not neutral, that a researcher is a moral subject, and its practices are moral ones, entail that moral reflections, that is,... More

Abstract: The scientific field is characterized by the disputes about the delimitation of the field problems, methods and theories that can be considered scientific. The recognition that it is not neutral, that a researcher is a moral subject, and its practices are moral ones, entail that moral reflections, that is, ethics, should be a core process of every researcher. Therefore ethics is not a heteronomous issue, and cannot be reduced to guidelines. In the first part of this article we examine the need to develop an open approach to the construction of guidelines in a plural scientific field that must take into account diverse paradigms, which implies different values. The Brazilian process of writing guidelines on research ethics for social science and humanities in the context of the Ministry of Health will be discussed as an example. In the second part we expand the analysis of research ethics posing a perspective that integrates qualitative research, social justice and discipline trends. In the final considerations we explore the possibility that research ethics is better discussed taking into account the ontology, epistemology and political values rather than one specific methodological approach or from a dichotomic perspective between biomedicine versus social science and humanities.

Guerriero, I & Correa, Peñaranda, F. (2015). Ethics, collective health, qualitative health research and social justice. Ciência & Saúde Coletiva, 20(9), 2631-2640. https://dx.doi.org/10.1590/1413-81232015209.05672015 ResearchGate: https://www.researchgate.net/publication/281427875_Ethics_collective_health_qualitative...

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Research ethics and public trust, preconditions for continued growth of internet mediated research: public confidence in internet mediate research (Papers: Ansgar Koene et al 2015)

Abstract: In this paper we argue for the position that responsible safeguards for privacy and ethical treatment of human data are of vital importance to retain the public confidence and trust that is necessary for the development and future success of internet mediated research (IMR). We support our position based on the high level of popular and media attention that is currently directed at IMR, which in combination with the relative uncertainties that still exist around the ethics of various IMR methods, raises the risk that IMR might succumb to a public backlash of similar proportions to the controversy that hit genetically modified (GM) crops in Europe. Based on the lessons that came out of the GM crops controversy we discuss the ethics requirements and challenges that must be met in order to retain the public trust in IMR. We end our argument by briefly reviewing a couple of examples... More

Abstract: In this paper we argue for the position that responsible safeguards for privacy and ethical treatment of human data are of vital importance to retain the public confidence and trust that is necessary for the development and future success of internet mediated research (IMR). We support our position based on the high level of popular and media attention that is currently directed at IMR, which in combination with the relative uncertainties that still exist around the ethics of various IMR methods, raises the risk that IMR might succumb to a public backlash of similar proportions to the controversy that hit genetically modified (GM) crops in Europe. Based on the lessons that came out of the GM crops controversy we discuss the ethics requirements and challenges that must be met in order to retain the public trust in IMR. We end our argument by briefly reviewing a couple of examples of “privacy protecting architectures” that are being developed for IMR. Keywords: Trust; Ethics; Privacy; Social Media Analysis; Transparency; Rights

Koene A., Perez E., J. Carter C., Statache R., Adolphs S., O'Malley C., Rodden T. and McAuley D. (2015) Research ethics and public trust, preconditions for continued growth of internet mediated research: public confidence in internet mediate research. In: International Conference of Information Systems Security and Privacy ICISSP 2015, February 9-11, 2015, Angers, Loire Valley, France. Presentation PPT: https://www.researchgate.net/publication/276204380_RESEARCH_ETHICS_AND... Presentation Paper: https://www.researchgate.net/publication/276204365_Research_Ethics_and_Public...

The full text is available from ResearchGate by clicking the download link

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Marginalized Populations and Research Ethics Online (Papers: Oliver Haimson 2015)

Abstract: To respectfully and accurately represent marginalized peoples' experiences in online communities research, great care must be taken to ethically approach such research. In this position paper, we explore and ask questions about the ethical gray areas that occur when studying marginalized groups online. We argue that greater input and... More

Abstract: To respectfully and accurately represent marginalized peoples' experiences in online communities research, great care must be taken to ethically approach such research. In this position paper, we explore and ask questions about the ethical gray areas that occur when studying marginalized groups online. We argue that greater input and feedback from members of study populations, during the research and the peer review process, could help marginalized communities by increasing accurate and respectful representations of group members' experiences and by improving design recommendations that come from research results. We offer several suggestions going forward for CSCW online communities researchers.

Haimson O, Ringland K & . (2015, March 16). Marginalized Populations and Research Ethics Online. Paper presented at CSCW Workshop on Ethics for Studying Sociotechnical Systems in a Big Data World. ResearchGate: https://www.researchgate.net/publication/281693003_Marginalized_Populations_and_Research_Ethics_Online Conference: https://cscwethics2015.wordpress.com/

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Ethics and History: STD Research in Guatemala from 1946 to 1948 (Papers: Daniel Sulmasy 2015)

Lecture by Daniel P Sulmasy, MD, University of Chicago at Tel Aviv University discussing STD research in Guatemala prior to the much publicised Tuskegee project. The Guatemalan work included deception/misleading participants, infecting healthy people, denying 'efficacious' treatment, re-infecting participants, persons living with mental illness, persons aged under eighteen years of... More

Lecture by Daniel P Sulmasy, MD, University of Chicago at Tel Aviv University discussing STD research in Guatemala prior to the much publicised Tuskegee project. The Guatemalan work included deception/misleading participants, infecting healthy people, denying 'efficacious' treatment, re-infecting participants, persons living with mental illness, persons aged under eighteen years of age, indigenous people, commercial sex workers and at least one participant who was terminally ill. This work was being conducted at the same time as the Nuremberg War Trials. This lecture explores the ethical features of this case, discusses the ethical guidance of the time, questions the methodological merit of the work, and touches on its resonance with work that might be currently underway. Also discusses some research integrity matters related to this work.

Sulmasy, D. (2015, April 14). Ethics and History: STD Research in Guatemala from 1946 to 1948 [Video file]. Retrieved from https://www.youtube.com/watch?v=MKtB2R9H5o4.

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Coding Ethical Decision-Making in Research (Papers: David Hartman et al 2016)

Published/Released on January 20, 2016 | Posted by Admin on February 24, 2016 | Keywords: , , , , , ,

Abstract: This paper presents methods and challenges attendant on the use of protocol analysis to develop a model of heuristic processing applied to research ethics. Participants are exposed to ethically complex scenarios and asked to verbalize their thoughts as they formulate a requested decision. The model identifies functional parts... More

Abstract: This paper presents methods and challenges attendant on the use of protocol analysis to develop a model of heuristic processing applied to research ethics. Participants are exposed to ethically complex scenarios and asked to verbalize their thoughts as they formulate a requested decision. The model identifies functional parts of the decision-making task: interpretation, retrieval, judgment and editing and seeks to reliably code participant verbalizations to those tasks as well as to a set of cognitive tools generally useful in such work. Important difficulties in the reliability and external validity of measurement are evaluated and a small set of illustrative data is used in support of that discussion. Results indicate that both intuitive emotional but also more deliberative cognition is present which is consistent with work in related literatures in expertise and in neuropsychology. Finally, the theoretical and practical potential of the approach is elaborated, particularly through links to a framing in Aristotelian ethics.

Hartmann, D. J., van Valey, T., & Fuqua, W. (2016). Coding Ethical Decision-Making in Research. Science and Engineering Ethics, 1-26. Publisher: http://link.springer.com/article/10.1007%2Fs11948-016-9756-3

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High risk yet invisible: conflicting narratives on social research involving children and young people, and the role of research ethics committees (Papers: Sarah Parsons et al 2015)

Universities have a special status in society because of the position they hold within their communities and their responsibilities for civic leadership. Consequently, there are increasing calls on universities to make their processes, teaching and finances more transparent to the general public in order to promote greater accountability. Guidance from the Association for Research Ethics Committees includes openness as one of the key principles for research ethics governance but little is known about whether universities are making information about these processes available to the public. Additionally, given the central importance of children and young people as stakeholders in education research, there is particular interest in what the available information would reveal about their inclusion in social research. A search of the websites of 33 social science research-leading institutions in the UK found that only 20 (60%) had publicly accessible information about ethics review and governance. The available information was... More

Universities have a special status in society because of the position they hold within their communities and their responsibilities for civic leadership. Consequently, there are increasing calls on universities to make their processes, teaching and finances more transparent to the general public in order to promote greater accountability. Guidance from the Association for Research Ethics Committees includes openness as one of the key principles for research ethics governance but little is known about whether universities are making information about these processes available to the public. Additionally, given the central importance of children and young people as stakeholders in education research, there is particular interest in what the available information would reveal about their inclusion in social research. A search of the websites of 33 social science research-leading institutions in the UK found that only 20 (60%) had publicly accessible information about ethics review and governance. The available information was highly variable in terms of detail, format and procedures and not very easy to locate. Information about the involvement of children and young people in social research was even more limited and variable; tending to emphasise the ‘vulnerable’ status of children as participants and yet providing little or no information about how to effectively support children to provide informed consent. The article concludes with discussion of the potentially concerning impact of this on the involvement of children and young people in research and the need for universities to do more to generate, share and encourage greater innovation in this area.

Parsons S, Abbott C, McKnight L, Davies C (2015) High risk yet invisible: conflicting narratives on social research involving children and young people, and the role of research ethics committees. British Educational Research Journal. 41(4). pp709-729. Publisher: http://dx.doi.org/10.1002/berj.3160

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The value of respect in human research ethics: a conceptual analysis and a practical guide (Papers: Ian Pieper & Colin Thomson 2014)

Published/Released on January 13, 2015 | Posted by Admin on February 22, 2016 | Keywords: , , , , , , , , , , ,

Abstract In order to continue to maintain public trust and confidence in human research, participants must be treated with respect. Researchers and Human Research Ethics Committee members need to be aware that modern considerations of this value include: the need for a valid consenting process, the protection of participants... More

Abstract In order to continue to maintain public trust and confidence in human research, participants must be treated with respect. Researchers and Human Research Ethics Committee members need to be aware that modern considerations of this value include: the need for a valid consenting process, the protection of participants who have their capacity for consent compromised; the promotion of dignity for participants; and the effects that human research may have on cultures and communities. This paper explains the prominence of respect as a value when considering the ethics of human research and provides practical advice for both researchers and Human Research Ethics Committee members in developing respectful research practices. Keywords Human research ethics, Human Research Ethics Committees (HREC), IRB, Respect

Pieper, Ian James & Thomson, Colin J. H. (2014) The value of respect in human research ethics: A conceptual analysis and a practical guide. Monash Bioethics Review, Volume 32, Issue 3, pp 232-253. Publisher: http://link.springer.com/article/10.1007%2Fs40592-014-0016-5

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Co-design and implementation research: Challenges and solutions for ethics committees (Papers: Felicity Goodyear-Smith, et al 2015)

Abstract Background Implementation science research, especially when using participatory and co-design approaches, raises unique challenges for research ethics committees. Such challenges may be poorly addressed by approval and governance mechanisms that were developed for more traditional research approaches such as randomised controlled trials. Discussion Implementation science commonly involves the partnership of researchers and stakeholders, attempting to understand and encourage uptake of completed or piloted research. A co-creation approach involves collaboration between researchers and end users from the onset, in question framing, research design and delivery, and influencing strategy, with implementation and broader dissemination strategies part of its design from gestation. A defining feature of co-creation is its emergent and adaptive nature, making detailed pre-specification of interventions and outcome measures impossible. This methodology sits oddly with ethics committee protocols that require precise pre-definition of interventions, mode of delivery, outcome measurements, and the role of study participants. But the strict (and, some would say, inflexible)... More

Abstract Background Implementation science research, especially when using participatory and co-design approaches, raises unique challenges for research ethics committees. Such challenges may be poorly addressed by approval and governance mechanisms that were developed for more traditional research approaches such as randomised controlled trials. Discussion Implementation science commonly involves the partnership of researchers and stakeholders, attempting to understand and encourage uptake of completed or piloted research. A co-creation approach involves collaboration between researchers and end users from the onset, in question framing, research design and delivery, and influencing strategy, with implementation and broader dissemination strategies part of its design from gestation. A defining feature of co-creation is its emergent and adaptive nature, making detailed pre-specification of interventions and outcome measures impossible. This methodology sits oddly with ethics committee protocols that require precise pre-definition of interventions, mode of delivery, outcome measurements, and the role of study participants. But the strict (and, some would say, inflexible) requirements of ethics committees were developed for a purpose – to protect participants from harm and help ensure the rigour and transparency of studies. We propose some guiding principles to help square this circle. First, ethics committees should acknowledge and celebrate the diversity of research approaches, both formally (through training) and informally (by promoting debate and discussion); without active support, their members may not understand or value participatory designs. Second, ground rules should be established for co-design applications (e.g. how to judge when ‘consultation’ or ‘engagement’ becomes research) and communicated to committee members and stakeholders. Third, the benefits of power-sharing should be recognised and credit given to measures likely to support this important goal, especially in research with vulnerable communities. Co-design is considered best practice, for example, in research involving indigenous peoples in New Zealand, Australia and Canada. Keywords: Co-design Community-based participatory research Implementation research Ethics committee Intervention studies Background

Goodyear-Smith F, Jackson C and Greenhalgh T (2015) Co-design and implementation research: challenges and solutions for ethics committees. BMC Medical Ethics 16(78). Available (Open Access) at: http://bmcmedethics.biomedcentral.com/articles/10.1186/s12910-015-0072-2 (accessed 20 February 2015).

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Watching the watchers: a scoping review of empirical studies evaluating research ethics review (Papers: Stuart Nicholls et al 2015)

Abstract: Introduction: The quality of ethics review is often a bone of contention with trialists. Accreditation typically focuses on administrative requirements rather than assessing the quality of decisions. To date there are no established metrics of quality for research ethics review. Aim: As a first stage we reviewed the empirical research regarding ethics review. We examined the range and nature of research activity in order to identify key themes, research foci, and research gaps to aid in the planning and commissioning of future research. Methods: A scoping review of published studies. A study was eligible if it was empirical, considered the ethics review process, was focused on human subjects, and was published in English. Manuscript content was coded by two reviewers. Results: 197 papers were included for data extraction. Few studies were from outside North America, Europe or Australasia. The most common research methodologies were surveys (N=93) and review of administrative data (N=79).... More

Abstract: Introduction: The quality of ethics review is often a bone of contention with trialists. Accreditation typically focuses on administrative requirements rather than assessing the quality of decisions. To date there are no established metrics of quality for research ethics review. Aim: As a first stage we reviewed the empirical research regarding ethics review. We examined the range and nature of research activity in order to identify key themes, research foci, and research gaps to aid in the planning and commissioning of future research. Methods: A scoping review of published studies. A study was eligible if it was empirical, considered the ethics review process, was focused on human subjects, and was published in English. Manuscript content was coded by two reviewers. Results: 197 papers were included for data extraction. Few studies were from outside North America, Europe or Australasia. The most common research methodologies were surveys (N=93) and review of administrative data (N=79). Only two longitudinal studies and one systematic review were identified. The most common subject of study was the review process (N=148) and IRB member views (N=101). Only 7 studies included research participants and only one research sponsors. Main outcomes were: IRB structures (N=105), variation in decisions (N=62), IRB membership (N=61), delays in approvals (N=54). Least studied were participant views (N=4), IRB member knowledge (N=9), and post-approval outcomes (N=23). Conclusion: To date studies have tended to focus on structure and timeliness of ethics review and there has been a lack of research around participant experiences, particularly in less developed countries or settings. A major limitation to date is the lack of longitudinal research which precludes any analyses of change or assessment of quality improvement in ethics review.

Nicholls S, Weijer C, McDonald M, and Carroll K. (2014 May). Watching the watchers: a scoping review of empirical studies evaluating research ethics review. Paper presented at 35th Meeting of the Society of Clinical Trials, At Philadelphia, PA https://www.researchgate.net/publication/262379596_Watching_the_watchers_a_scoping_review_of_empirical_studies_evaluating_research_ethics_review (Accessed 18 February 2015

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Detecting, Preventing, and Responding to “Fraudsters” in Internet Research: Ethics and Tradeoffs (Papers: Jennifer Teitcher et al 2015)

Abstract:  Internet-based health research is increasing, and often offers financial incentives but fraudulent behavior by participants can result. Specifically, eligible or ineligible individuals may enter the study multiple times and receive undeserved financial compensation. We review past experiences and approaches to this problem and propose several new strategies. Researchers can detect and prevent Internet research fraud in four broad ways: (1) through the questionnaire/instrument (e.g., including certain questions in survey; and software for administering survey); (2) through participants' non-questionnaire data and seeking external validation (e.g., checking data for same email addresses, usernames, passwords, and/or fake addresses or phone numbers; (3) through computer information, (e.g., IP addresses and cookies), and 4) through study design (e.g., avoid lump sum compensation and interviewing participants). These approaches each have pros and cons, and raise ethical, legal, and logistical questions, given that ethical tensions can emerge between preserving the integrity of research vs. protecting... More

Abstract:  Internet-based health research is increasing, and often offers financial incentives but fraudulent behavior by participants can result. Specifically, eligible or ineligible individuals may enter the study multiple times and receive undeserved financial compensation. We review past experiences and approaches to this problem and propose several new strategies. Researchers can detect and prevent Internet research fraud in four broad ways: (1) through the questionnaire/instrument (e.g., including certain questions in survey; and software for administering survey); (2) through participants' non-questionnaire data and seeking external validation (e.g., checking data for same email addresses, usernames, passwords, and/or fake addresses or phone numbers; (3) through computer information, (e.g., IP addresses and cookies), and 4) through study design (e.g., avoid lump sum compensation and interviewing participants). These approaches each have pros and cons, and raise ethical, legal, and logistical questions, given that ethical tensions can emerge between preserving the integrity of research vs. protecting the privacy and confidentiality of study respondents. While past discussions concerning the ethics of online research have tended to focus on the participants' ability to trust the researchers, needs now arise to examine researchers' abilities to trust the participants. This analysis has several critical implications for future practice, policy, and research. "Research that recruits and surveys participants online is increasing, but is subject to fraud whereby study respondents - whether eligible or ineligible - participate multiple times. Online Internet research can provide investigators with large sample sizes and is cost efficient. Internet-based research also provides distance between the researchers and participants, allowing the participant to remain confidential and/or anonymous, and thus to respond to questions freely and honestly without worrying about the stigma associated with their answers. However, increasing and recurring instances of fraudulent activity among subjects raise challenges for researchers and Institutional Review Boards (IRBs).2 The distance from participants, and the potential anonymity and convenience of online research allow for individuals to participate easily more than once, skewing results and the overall quality of the data." Detecting, Preventing, and Responding to “Fraudsters” in Internet Research: Ethics and Tradeoffs. Available from: .

Teitcher J, Bockting W, Bauermeister J, Hoefer C, Miner M, Klitzman R (2015) Detecting, Preventing, and Responding to “Fraudsters” in Internet Research: Ethics and Tradeoffs The Journal of Law, Medicine & Ethics, 43(1).  pp. 116-133, . Available at: https://www.researchgate.net/publication/274459694_Detecting_Preventing_and_Responding_to_Fraudsters_in_Internet_Research_Ethics_and_Tradeoffs (accessed Feb 17, 2016]. Publisher: https://www.aslme.org/index.php/detecting-preventing-and-responding-to-fraudsters-in-internet-research-ethics-and-tradeoffs.html

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Strictly Confidential?: Integrity and the Disclosure of Criminological and Socio-Legal Research (Papers: Mark Israel 2004)

Published/Released on May 07, 2004 | Posted by Admin on February 13, 2016 | Keywords: , , , , , , , , , ,

Abstract: When people allow researchers to investigate them, they often negotiate terms for the agreement. Participants in research may, for example, consent on the basis that the information obtained about them will be used only by the researchers and only in particular ways. The information is private and is voluntarily offered to the researcher in confidence. Researchers can justify protecting confidentiality by appealing to consequentialist-, rights- or fidelity-based arguments. Failure to respect confidentiality might not only affect one research project, but could have a ‘chilling effect’ on all criminological research. However, various researchers working in criminology, socio–legal studies and related fields have come under institutional, legal, physical and ethical pressures to disclose confidential information. They have been subpoenaed, imprisoned and have faced threats from armed drug dealers. To protect their sources, they have lied to correctional authorities, prosecutors and police (as well as to armed drug dealers). Drawing on an... More

Abstract: When people allow researchers to investigate them, they often negotiate terms for the agreement. Participants in research may, for example, consent on the basis that the information obtained about them will be used only by the researchers and only in particular ways. The information is private and is voluntarily offered to the researcher in confidence. Researchers can justify protecting confidentiality by appealing to consequentialist-, rights- or fidelity-based arguments. Failure to respect confidentiality might not only affect one research project, but could have a ‘chilling effect’ on all criminological research. However, various researchers working in criminology, socio–legal studies and related fields have come under institutional, legal, physical and ethical pressures to disclose confidential information. They have been subpoenaed, imprisoned and have faced threats from armed drug dealers. To protect their sources, they have lied to correctional authorities, prosecutors and police (as well as to armed drug dealers). Drawing on an international literature, I examine some of the legal and methodological measures that researchers have taken to protect data, as well as some of the rationales that might justify disclosing information given in confidence by research participants. "When people allow researchers to investigate them, they often negotiate terms for the agreement. Participants in research may, for example, consent on the basis that the information obtained about them will be used only by specific researchers and only in particular ways. The information is private and is voluntarily offered to the researcher in confidence. In some research projects, negotiations around confidentiality may be fairly straightforward. Some researchers are able to operate in relatively predictable contexts, where standardized assurances about material may be included in a covering letter with a questionnaire. However, other work takes place in informal and unpredictable environments, where agreements may need to be negotiated with individuals and groups and renegotiated during the course of lengthy fieldwork. Some forms of research may create significant risks for research participants. In criminological and socio–legal research, it is typically the researcher who approaches a potential participant and asks for confidential information to be revealed in exchange for . . . possibly not very much direct benefit (Robinson 1991). As two Canadian criminologists, John Lowman and Ted Palys, have argued: Our research subjects divulge information in confidence about their own criminal activity . . . and sexual activity to a person who has asked them to divulge the information, with the full knowledge they are offering us ‘data’ that will at some point be compiled, analyzed and published. The researcher usually..."

Israel, M (2004) Strictly Confidential? Integrity and the Disclosure of Criminological and Socio-Legal Research. British Journal of Criminology 44/5, pp715-40. https://www.academia.edu/16344714/Strictly_Confidential_Integrity_and_the_Disclosure_of_Criminological_and_Socio-Legal_Research?verify_fulltext=42515537 Publisher: http://bjc.oxfordjournals.org/content/44/5/715

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Approving or Improving Research Ethics in Management Journals (Papers: Michelle Greenwood 2015)

Abstract: Despite significant scholarly debate about knowledge production in the management discipline through the peer-review journal processes, there is minimal discussion about the ethical treatment of the research subject in these publication processes. In contrast, the ethical scrutiny of management research processes within research institutions is often highly formalized and very focused on the protection of research participants. Hence, the question arises of how management publication processes should best account for the interests of the research subject, both in the narrow sense of specific research participants and in the broader understanding of the subject of the research. This question is particularly pertinent in light of significant codification of research ethics within academic institutions, and increasing self-reflection within the management discipline about the “good” of management research and education. Findings from a survey and interviews with management journal editors (and others involved in journal publication) reveal a complex scenario; many editors... More

Abstract: Despite significant scholarly debate about knowledge production in the management discipline through the peer-review journal processes, there is minimal discussion about the ethical treatment of the research subject in these publication processes. In contrast, the ethical scrutiny of management research processes within research institutions is often highly formalized and very focused on the protection of research participants. Hence, the question arises of how management publication processes should best account for the interests of the research subject, both in the narrow sense of specific research participants and in the broader understanding of the subject of the research. This question is particularly pertinent in light of significant codification of research ethics within academic institutions, and increasing self-reflection within the management discipline about the “good” of management research and education. Findings from a survey and interviews with management journal editors (and others involved in journal publication) reveal a complex scenario; many editors believe that a formalized requirement within the journal publication process may have detrimental outcomes and, in fact, diminish the ethical integrity of management scholarship. Building on these findings, this paper argues that ethical concern for the research subject merely in terms of institutional rule compliance and avoidance of harm to individual participants is insufficient, and calls for explicitly positive engagement with both the individual and the collective subject of management research should receive due ethical consideration. An alternative model involving reflexive ethical consideration of research subjects across the publication process—with implications for role of authors, reviewers, editors, and research subjects—is outlined. Keywords: Research ethics Publication ethics Academic ethics Human subjects Ethics committees Research education Research training

Greenwood M (2015) Approving or Improving Research Ethics in Management Journals. Journal of Business Ethics. Available at: https://www.researchgate.net/publication/273520178_Approving_or_Improving_Research_Ethics_in_Management_Journals Publisher: http://link.springer.com/article/10.1007%2Fs10551-015-2564-x

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Marketing research ethics: Clients and field services (Papers: Michael Hyman & Jeremy Sierra 2015)

Abstract: Although many people believe marketing ethics is an oxymoron, our goal is to convince you otherwise and to provide a basic perspective for making more ethical marketing research decisions about clients and field services. "Research Clients In the previous article, we focused on researchers’ obligations to respondents. Now we discuss researcher’s obligations... More

Abstract: Although many people believe marketing ethics is an oxymoron, our goal is to convince you otherwise and to provide a basic perspective for making more ethical marketing research decisions about clients and field services. "Research Clients In the previous article, we focused on researchers’ obligations to respondents. Now we discuss researcher’s obligations to research clients. A researcher should avoid abusing research designs, methods, or results. A bad experience discredits marketing research and discourages businesspeople from relying on it when it is important. Before we cover the main abuses you should avoid, here are six examples of ways in which researchers abuse clients:

* Overcharging and double-billing. Low-ball pricing, or winning a bid to conduct a research study knowing it cannot be completed at the bid price and then immediately raising the price after winning the bid, is problematic.

* Failing to maintain client confidentiality. Clients own the data collected for them; hence, researchers have no right to provide those data to other parties.

* Failing to avoid a conflict of interest when a researcher has multiple clients in the same industry. What researchers learn in conducting a study for one client should not be shared "

Hyman M, Sierra J (2015) Marketing Research Ethics:Clients and Field Services. Business Outlook. 13(6). Available at: https://www.researchgate.net/publication/275770505_Marketing_research_ethics_Clients_and_field_services Publisher: http://business.nmsu.edu/nmsu-business-outlook-june-2015/

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Too Much Information: Visual Research Ethics in the Age of Wearable Cameras (Tze Ming Mok, et al 2014)

Published/Released on December 25, 2014 | Posted by Admin on February 11, 2016 | Keywords: , , , , , , , , ,

Abstract: When everything you see is data, what ethical principles apply? This paper argues that first-person digital recording technologies challenge traditional institutional approaches to research ethics, but that this makes ethics governance more important, not less so. We review evolving ethical concerns across four fields: Visual ethics; ubiquitous computing; mobile... More

Abstract: When everything you see is data, what ethical principles apply? This paper argues that first-person digital recording technologies challenge traditional institutional approaches to research ethics, but that this makes ethics governance more important, not less so. We review evolving ethical concerns across four fields: Visual ethics; ubiquitous computing; mobile health; and grey literature from applied or market research. Collectively, these bodies of literature identify new challenges to traditional notions of informed consent, anonymity, confidentiality, privacy, beneficence and maleficence. Challenges come from the ever-increasing power, breadth and multi-functional integration of recording technologies, and the ubiquity and normalization of their use by participants. Some authors argue that these evolving relationships mean that institutional ethics governance procedures are irrelevant or no longer apply. By contrast, we argue that the fundamental principles of research ethics frameworks have become even more important for the protection of research participants, and that institutional frameworks need to adapt to keep pace with the ever-increasing power of recording technologies and the consequent risks to privacy. We conclude with four recommendations for efforts to ensure that contemporary visual recording research is held appropriately accountable to ethical standards: (i) minimizing the detail, scope, integration and retention of captured data, and limiting its accessibility; (ii) formulating an approach to ethics that takes in both the 'common rule' approaches privileging anonymity and confidentiality together with principles of contextual judgement and consent as an ongoing process; (iii) developing stronger ethical regulation of research outside academia; (iv) engaging the public and research participants in the development of ethical guidelines. Keywords: Ethics Digital research Ubiquitous computing Research governance Visual ethics Privacy Wearable cameras

Tze Ming Mok, Flora Cornish, Jen Tarr (2014) Too Much Information: Visual Research Ethics in the Age of Wearable Cameras. Integrative Psychological and Behavioral Science. 2(49). Available at: https://www.researchgate.net/publication/270001375_Too_Much_Information_Visual_Research_Ethics_in_the_Age_of_Wearable_Cameras (accessed 11 February 2016) Publisher: http://link.springer.com/article/10.1007/s12124-014-9289-8

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Why should ethics approval be required prior to publication of health promotion research? (Papers: Ainsley J Newson and Wendy Lipworth 2015)

Published/Released on September 01, 2015 | Posted by Admin on February 8, 2016 | Keywords: , , , , , , , , ,

Abstract: Issue addressed:Most academic journals that publish studies involving human participants require evidence that the research has been approved by a human research ethics committee (HREC). Yet journals continue to receive submissions from authorswho have failed to obtain such approval. In this paper, we provide an ethical justification of why... More

Abstract: Issue addressed:Most academic journals that publish studies involving human participants require evidence that the research has been approved by a human research ethics committee (HREC). Yet journals continue to receive submissions from authorswho have failed to obtain such approval. In this paper, we provide an ethical justification of why journals should not, in general,publish articles describing research that has no ethics approval, with particular attention to the health promotion context. Methods:Using theoretical bioethical reasoning and drawing on a case study, we first rebut some potential criticisms of the need for research ethics approval. We then outline four positive claims to justify a presumption that research should, in most instances,be published only if it has been undertaken with HREC approval. Results:We present four justifications for requiring ethics approval before publication: (1) HREC approval adds legitimacy to the research; (2) the process of obtaining HREC approval can improve the quality of an intervention being investigated;(3) obtaining HREC approval can help mitigate harm; and (4) obtaining HREC approval demonstrates respect for persons. Conclusion:This paper provides a systematic and comprehensive assessment of why research ethics approval should generally be obtained before publishing in the health promotion context.So what?Journals such as theHealth Promotion Journal of Australiahave recently begun to require research ethics approvalfor publishing research. Health promotion researchers will be interested in learning the ethical justification for this change.

Newson A and Lipworth W (2015) Why should ethics approval be required prior to publication of health promotion research?. Health Promotion Journal of Australia, 2015,26, 170–175. Available at: https://www.researchgate.net/publication/283640817_Why_should_ethics_approval_be_required_prior_to_publication_of_health_promotion_research (accessed 9 February 2016) Publisher (Open Access): http://www.publish.csiro.au/?paper=HE15034

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Academic Guidance in Medical Student Research: How Well Do Supervisors and Students Understand the Ethics of Human Research? (Papers: K M Weston, et al 2015)

Abstract: Research is increasingly recognised as a key component of medical curricula,offering a range of benefits including development of skills in evidence-based medicine.The literature indicates that experienced academic supervision or mentoring is important in any research activity and positively influences research output. The aim of this project was to investigate the human research ethics experiences and knowledge of three groups: medical students, and university academic staff and clinicians eligible to supervise medical student research projects; at two Australian universities. Training in research ethics was low amongst academic staff and clinicians eligible to supervise medical student research. Only two-thirds of academic staff (67.9 %) and students (65.7 %) and less than half of clinicians surveyed(47.1 %;p=0.014) indicated that specific patient consent was required for a doctor to include patient medical records within a research publication. There was limited awareness of requirements for participant information and consent forms amongst all groups. In... More

Abstract: Research is increasingly recognised as a key component of medical curricula,offering a range of benefits including development of skills in evidence-based medicine.The literature indicates that experienced academic supervision or mentoring is important in any research activity and positively influences research output. The aim of this project was to investigate the human research ethics experiences and knowledge of three groups: medical students, and university academic staff and clinicians eligible to supervise medical student research projects; at two Australian universities. Training in research ethics was low amongst academic staff and clinicians eligible to supervise medical student research. Only two-thirds of academic staff (67.9 %) and students (65.7 %) and less than half of clinicians surveyed(47.1 %;p=0.014) indicated that specific patient consent was required for a doctor to include patient medical records within a research publication. There was limited awareness of requirements for participant information and consent forms amongst all groups. In the case of clinical trials, fewer clinicians (88.4 %) and students (83.3 %) than academics (100 %) indicated there was a requirement to obtain consent (p=0.009). Awareness of the ethics committee focus on respect was low across all groups. This project has identified significant gaps in human research ethics understanding among medical students, and university academic staff and clinicians. The incorporation of research within medical curricula provides the impetus for medical schools and their institutions to ensure that academic staff and clinicians who are eligible and qualified to supervise students’ research projects are appropriately trained in human research ethics Keywords: Research ethics.Medical student.Medical school.Curriculum.Ethics committee

Weston K M, Mullan J, Hu W, Thomson C, Rich W, Knight-Billington P, Marjadi B, McLennan P (2015)Academic Guidance in Medical Student Research: How Well Do Supervisors and Students Understand the Ethics of Human Research?. Journal of Academic Ethics:1-16. Available at: https://www.researchgate.net/publication/284247018_Academic_Guidance_in_Medical_Student_Research_How_Well_Do_Supervisors_and_Students_Understand_the_Ethics_of_Human_Research (accessed 8 February 2016) Publisher: http://link.springer.com/article/10.1007%2Fs10805-015-9248-0

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Applying “Place” to Research Ethics and Cultural Competence/Humility Training (Papers: Dianne P Quigley 2016)

Abstract: Research ethics principles and regulations typically have been applied to the protection of individual human subjects. Yet, new paradigms of research that include the place-based community and cultural groups as partners or participants of environmental research interventions, in particular, require attention to place-based identities and geographical contexts. This paper... More

Abstract: Research ethics principles and regulations typically have been applied to the protection of individual human subjects. Yet, new paradigms of research that include the place-based community and cultural groups as partners or participants of environmental research interventions, in particular, require attention to place-based identities and geographical contexts. This paper argues the importance of respecting “place” within human subjects protections applied to communities and cultural groups as part of a critical need for research ethics and cultural competence training for graduate research students. These protections and benefits are extensions of the Belmont Principles and have been included in recent recommendations from research regulatory committees. Keywords: Human subjects Beneficence Justice Group protections Cultural competence Community-based research Bioethical principles

Quigley D (2016) Applying “Place” to Research Ethics and Cultural Competence/Humility Training. Journal of Academic Ethics March 2016, Volume 14, Issue 1, pp 19-33 (First online 13 January 2016, Accessed 5 February) http://link.springer.com/article/10.1007%2Fs10805-015-9251-5

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I’m Okay, You’re Okay?: Reflections on the Well-Being and Ethical Requirements of Researchers and Research Participants in Conducting Qualitative Fieldwork Interviews (Papers: Wendy Mitchell and Annie Irvine 2008)

Abstract: In this paper the authors present their reflections on a U.K. government–funded study exploring mental health and employment. Conducting research on a sensitive theme with a potentially vulnerable group gave renewed focus to some social research issues, including consent and control, rapport building, managing and responding to emotion,... More

Abstract: In this paper the authors present their reflections on a U.K. government–funded study exploring mental health and employment. Conducting research on a sensitive theme with a potentially vulnerable group gave renewed focus to some social research issues, including consent and control, rapport building, managing and responding to emotion, and offering appropriate longer term support. The researchers discuss their personal approaches and experiences (practical, methodological, ethical) during and after the fieldwork process. In the paper the authors highlight some of the challenges they faced and discuss how these were addressed and managed, sometimes differently, and not always resolved. They demonstrate the need for researchers to be aware of their “research footprint,” in particular the need to be reflexive and responsive to participants’ emotional well-being, and for funders and employers to also be sensitive to and mindful of the demands of social research, including impacts on researchers’ well-being. Keywords: fieldwork practice, face-to-face interviews, participant well-being, researcher well-being, interview reciprocity, research footprint Authors’ note:  We thank the 40 people who participated in interviews with us for the Mental Health and Employment study. Each one of them made a valuable contribution to project. We would also like to thank Simon Gilbody, Professor of Psychological Medicine and Health Services Research, for his advice and support for the project, and Anne Corden, Senior Research Fellow, for constructive comments on earlier drafts of this paper. The views expressed in the article are those of the authors and not necessarily those of the research funding body (The Department for Work and Pensions).

Mitchell W & Irvine A (2008) I’m Okay, You’re Okay?: Reflections on the Well-Being and Ethical Requirements of Researchers and Research Participants in Conducting Qualitative Fieldwork Interviews. International Journal of Qualitative Methods December 2008 vol. 7 no. 4 31-44 ResearchGate: https://www.researchgate.net/publication/277172512_I%27m_Okay_You%27re_Okay_Reflections_on_the_Well-Being_and_Ethical_Requirements_of_Researchers_and_Research_Participants_in_Conducting... (accessed Feb 4, 2016). Publisher (Open Access): http://ijq.sagepub.com/content/7/4/31.full#sec-1

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“A Real Super Ethical Super Moral Perspective:” The Research Ethics of Research Participants (Papers: Justin Snyder and Joanna Lysons 2015)

Published/Released on November 12, 2015 | Posted by Admin on February 2, 2016 | Keywords: , , , , , ,

"What are the research protections ethics of contemporary research participants? There are few answers to this question. However, to fully honor the principle of “respect for persons,” human protections programs should engage community opinion. Some have called this an “evidence-based and participant-centered” approach to protections (e.g. McDonald, Cox, and... More

"What are the research protections ethics of contemporary research participants? There are few answers to this question. However, to fully honor the principle of “respect for persons,” human protections programs should engage community opinion. Some have called this an “evidence-based and participant-centered” approach to protections (e.g. McDonald, Cox, and Townsend 2014). With this in mind, five focus groups were conducted with former research participants. The focus groups addressed perceptions of research participation generally, but the findings for this poster come specifically from questions referring to research protections policies and programs. Participants knew or assumed, as well as desired, there to be ethical oversight of investigators, but they showed only a vague understanding of the protections actually afforded them. We found, nonetheless, that research participants and human protections programs share similar ethical principles. Both generally agree on what it means to have, adopting the words of one research participant, “a real super ethical super moral perspective.” The poster identifies 4 ethical principles or expectations for human protection programs commonly vocalized in the focus groups. Future research should explore how participants do or would apply their research ethics, which will likely reveal discrepancies among participants and between participants and protections programs"

Snyder J and Lysons J (2015) “A Real Super Ethical Super Moral Perspective:” The Research Ethics of Research Participants. Poster at PRIM&R’s Advancing Ethical Research Conference, Boston MA, 12-15 November 2015. Available at: https://www.researchgate.net/publication/282610253_A_Real_Super_Ethical_Super_Moral_Perspective_The_Research_Ethics_of_Research_Participants (accessed 3 February 2016)

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No one’s discussing the elephant in the room: contemplating questions of research impact and benefit in Aboriginal and Torres Strait Islander Australian health research (Papers: Roxanne Bainbridge et al 2015)

ABSTRACT: Background There remains a concern that Indigenous Australians have been over-researched without corresponding improvements in their health; this trend is applicable to most Indigenous populations globally. This debate article has a dual purpose: 1) to open a frank conversation about the value of research to Indigenous Australian populations; and 2)... More

ABSTRACT: Background There remains a concern that Indigenous Australians have been over-researched without corresponding improvements in their health; this trend is applicable to most Indigenous populations globally. This debate article has a dual purpose: 1) to open a frank conversation about the value of research to Indigenous Australian populations; and 2) to stimulate ways of thinking about potential resolutions to the lack of progress made in the Indigenous research benefit debate. Discussion Capturing the meaning of research benefit takes the form of ethical value-oriented methodological considerations in the decision-making processes of Indigenous research endeavours. Because research practices come from Western knowledge bases, attaining such positions in research means reconciling both Indigenous and Western knowledge systems to produce new methodologies that guide planning, evaluating and monitoring of research practices as necessary. Increasingly, more sophisticated performance measures have been implemented to ensure academic impact and benefits are captured. Assessing societal and other non-academic impacts and benefits however, has not been accorded corresponding attention. Research reform has only focussed on research translation in more recent years. The research impact debate must take account of the various standards of accountability (to whom), impact priorities (for whom), positive and negative impacts, and biases that operate in describing impact and measuring benefit. Summary A perennial question in Indigenous research discourse is whether the abundance of research conducted; purportedly to improve health, is justified and benefits Indigenous people in ways that are meaningful and valued by them. Different research stakeholders have different conceptions of the value and nature of research, its conduct, what it should achieve and the kinds of benefits expected. We need to work collaboratively and listen more closely to the voice of Indigenous Australians to better understand, demonstrate and measure health research benefits. The authors conclude that as an imperative, a systematic benefit assessment strategy that includes identification of research priorities and planning, monitoring and evaluation components needs to be developed and implemented across research projects. In Indigenous health research, this will often mean adopting a benefit-led approach by changing the way research is done and preferencing alternative research methodologies. As a point of departure to improving impact and reaching mutually beneficial outcomes for researchers and partners in Indigenous health research, we need to routinise the assessment of benefit from outset of research as one of the standards toward which we work. Keywords Aboriginal and Torres Strait Islander Indigenous Health Research benefit Research impact Research translation

Bainbridge R, Tsey K, McCalman J, Kinchin I, Saunders V, Watkin Lui F, Cadet-James Y, Miller A and Lawson K (2015) No one’s discussing the elephant in the room: contemplating questions of research impact and benefit in Aboriginal and Torres Strait Islander Australian health research. BMC Public Health DOI: 10.1186/s12889-015-2052-3. Available at: http://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-015-2052-3 (accessed 30 January 2015).

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Negotiating ‘ethically important moments’ in research with young people: reflections of a novice researcher (Papers: Eileen McEvoy et al 2015)

Abstract: The latter half of the twentieth century witnessed a surge in interest around ethics in research. Originally focused on the compilation of ethics guidelines and the importance of having all research approved by institutional review boards before commencement, discussions of research ethics have more recently centred on how such guidelines translate into ethical... More

Abstract: The latter half of the twentieth century witnessed a surge in interest around ethics in research. Originally focused on the compilation of ethics guidelines and the importance of having all research approved by institutional review boards before commencement, discussions of research ethics have more recently centred on how such guidelines translate into ethical practice during the research process. Leisure research has been no exception to this trend. Using as an example, a research project in Ireland centred on focus groups with young people (aged 15–19) regarding their physical activity behaviours and preferences, this paper explores the situated judgement of the interviewer, a novice researcher, as she attempted to navigate four ethically important moments. Discussions centre on moments where the interviewer’s situated judgement resulted in research ethics being compromised and moments where the interviewer experienced difficulty reconciling personal and research ethics. Our intention in sharing the situations and resulting questions from this research is to shine a light on the decision-making which takes place during the research process and consider how researchers might prepare adequately to make decisions in an ethically sound way.

McEvoy E, Enright E & MacPhail A (2015) Negotiating ‘ethically important moments’ in research with young people: reflections of a novice researcher. Leisure Studies ·DOI: 10.1080/02614367.2015.1119877 ResearchGate: https://www.researchgate.net/publication/286882465_Negotiating_%27ethically_important... Publisher: http://www.tandfonline.com/doi/abs/10.1080/02614367.2015.1119877?journalCode=rlst20

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University human research ethics committees’ provisions for expedited review of above-low risk research such as post-disaster community interview studies (Papers – Report: Jim Mclennan 2015)

Published/Released on June 01, 2015 | Posted by Admin on January 26, 2016 | Keywords: , , , , , , ,

Abstract: There is widespread agreement among researchers and emergency services personnel that changes in climate and human settlement patterns in Australia will result in more frequent natural disaster events in future. Emergency management agencies need to know how community members prepare for and respond to disasters. The Bushfire and Natural... More

Abstract: There is widespread agreement among researchers and emergency services personnel that changes in climate and human settlement patterns in Australia will result in more frequent natural disaster events in future. Emergency management agencies need to know how community members prepare for and respond to disasters. The Bushfire and Natural Hazards Cooperative Research Centre (BNHCRC) may expect to be asked to respond to requests from emergency services agencies for researchers to go into the field to interview survivors about their experiences quite soon after disaster events such as bushfires, cyclones, floods, and severe storms. Researchers are most likely to come from universities. Some circumstances may require very rapid review of above-low risk ethics applications from university researchers seeking to conduct post-disaster field studies, by university human research ethics committees (HRECs). In 2014 Australia’s 39 university HRECs were contacted and asked to describe any provisions they had for such expedited reviews. Replies were received from 28 HRECs (72%). Nine of these 28 described provisions for expedited review of above-low risk applications--four described formal procedures, and five described ad hoc procedures that could be followed if required. Nineteen HRECs (68%) stated that they had no provisions currently for expedited review of above-low risk ethics applications; six of these discussed possible ways in which such a request might possibly be facilitated depending on circumstances. It was concluded that university researchers who may be asked by the BNHCRC to conduct post-disaster field research involving human participants should investigate their particular university HREC’s provisions (if any) for expedited review of above-low risk research well in advance of an actual disaster event and plan for possible post-disaster research accordingly. One approach suggested by several of the responding HRECs was that researchers should prepare a generic ethics application for possible above-low risk post-disaster research, secure provisional ethics approval, and submit a subsequent Application For Modification of the research for expedited approval once the specifics of a study are known.

John Mclennon (2015) University human research ethics committees' provisions for expedited review of above-low risk research such as post-disaster community interview studies. Report, Department of Industry and Science. Available at: https://www.researchgate.net/publication/279194481_University_human_research_ethics_committees... (accessed 27 January 2015).

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The curly fry conundrum why social media likes say more than you might think (Paper – Video: Jennifer Golbeck 2013)

Published/Released on April 30, 2014 | Posted by Admin on January 23, 2016 | Keywords: , , , , , ,

This video explores privacy issues associated with social media and moves towards considering the harms and benefits that might be associated with research on human-computer interaction. "It’s sometimes said of Facebook that the users aren’t the customer, they’re the product. And so how do you get a company to cede... More

This video explores privacy issues associated with social media and moves towards considering the harms and benefits that might be associated with research on human-computer interaction. "It’s sometimes said of Facebook that the users aren’t the customer, they’re the product. And so how do you get a company to cede control of their main asset back to the users? It’s possible, but I don’t think it’s something that we’re going to see change quickly. Do you like curly fries? Have you Liked them on Facebook? Find out the surprising things Facebook (and others) can guess about you from your random Likes and Shares. Computer scientist Jennifer Golbeck explains how this came about, how some applications of the technology are not so cute — and why she thinks we should return the control of information to its rightful owners." [embed]http://www.ted.com/talks/jennifer_golbeck_the_curly_fry_conundrum_why_social_media_likes_say_more_than_you_might_think[/embed]

Golbeck J (2013, October). The curly fry conundrum why social media likes say more than you might think [Video file]. Retrieved from https://www.ted.com/talks/jon_ronson_what_happens_when_online_shaming_spirals_out_of_control?language=en

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Social media personhood as a challenge to research ethics: Exploring the case of the Facebook experiment (Papers: Jukka Jouhki et al 2015)

Published/Released on November 20, 2015 | Posted by Admin on January 22, 2016 | Keywords: , , , , , , , , ,

Abstract: The paper explores research ethics in the era of social media and big data by discussing a debated Facebook experiment about emotional contagion. "Our attitudes towards new digital media have changed over time. We used to “starve” for data but now we are “drowning” in it (Puschmann and Burgess 2014, p.... More

Abstract: The paper explores research ethics in the era of social media and big data by discussing a debated Facebook experiment about emotional contagion. "Our attitudes towards new digital media have changed over time. We used to “starve” for data but now we are “drowning” in it (Puschmann and Burgess 2014, p. 1699). Also, when in the early days of the internet the new technology was hyped as an “identity transforming cyberspace”, nowadays, after exponential growth of the digital network and acertain routinization of its charisma (Morrison 2006, p. 367–368), it has been popularized, domesticated, and normalized into a technology for “everyday life management”. It is not the “consensual hallucination machine” it once was (McKelvey et al. 2015). The technologies we use influence our identity and personhood. Or, to use Heidegger’s term, technology is part of our being-in-the-world (Dreyfus 1991). Our concerns over technology and data depend on the sociocultural context, and, ultimately, on the individual – we are either more worried or less worried nowadays, depending on the study (Kennedy et al. 2015, p. 4)."

Jukka Jouhki, Epp Lauk, Maija Penttinen, Jukka Rohila, Niina Sormanen, Turo Uskali (2015) Social media personhood as a challenge to research ethics: Exploring the case of the Facebook experiment. Conference Paper · Nov 2015 https://www.researchgate.net/publication/284156533_Social_media_personhood_as_a_challenge_to...

Also see 1. (25/03/14) Experimental evidence of massive-scale emotional contagion through social networks 2. (01/04/14) Facebook fiasco: was Cornell's study of ‘emotional contagion’ an ethics breach?  3. (10/05/15) Social media personhood as a challenge to research ethics: Exploring the case of the Facebook experiment 4. (10/05/15) Untangling research and practice: What Facebook's "emotional contagion" study teaches us 5. (20/05/16) Scientists are just as confused about the ethics of big-data research as you 6. (17/06/16) Are Research Ethics Obsolete In The Era Of Big Data?

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Lay members of New Zealand research ethics committees: Who and what do they represent? (Papers: Gremillion et al 2015)

Published/Released on June 08, 2015 | Posted by Admin on January 21, 2016 | Keywords: , , , , , , ,

Abstract: Since the 1988 Cartwright Inquiry, lay members of ethics committees have been tasked with ensuring that ordinary New Zealanders are not forgotten in ethical deliberations. Unlike Institutional Review Boards (IRBs, or ethics committees) in North America, where lay members constitute a fraction of ethics committee membership, 50% of most... More

Abstract: Since the 1988 Cartwright Inquiry, lay members of ethics committees have been tasked with ensuring that ordinary New Zealanders are not forgotten in ethical deliberations. Unlike Institutional Review Boards (IRBs, or ethics committees) in North America, where lay members constitute a fraction of ethics committee membership, 50% of most New Zealand ethics committees are comprised of lay members. Lay roles are usually defined in very broad terms, which can vary considerably from committee to committee. This research queries who lay representatives are, what they do, and what if anything they represent. Our findings are based on data collection with 12 participants: eight semi-structured interviews with lay members from diverse types of ethics committees who described their roles, and commentary from four ethics committee chairs, three of these lay members who commented on this article’s final draft. Findings indicate that the role of New Zealand lay persons – although distinctively valued – is otherwise similar to the documented role of lay persons within North American ethics committees. Lay members see their role as primarily protecting the research participant and at times offering a corrective to non-lay members’ views and the interests of their institutions. However, in spite of their numbers, most lay members do not see themselves as representing any particular constituent groups or institutionally unaffiliated areas of concern. On tertiary education committees especially, there is a good deal of ambiguity in the lay role.

Gremillion, H., Tolich, M., & Bathurst, R. (2015). Lay members of New Zealand research ethics committees: Who and what do they represent? Research Ethics, 11(2), 82-97. ResearchGate: https://www.researchgate.net/publication/280204212_Lay_members_of_New_Zealand... Publisher: http://rea.sagepub.com/content/11/2/82.abstract

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National Human Research Ethics: A Preliminary Comparative Case Study of Germany, Great Britain, Romania and Sweden (Papers: Bernard Gallagher et al 2015)

Abstract: Although international research is increasing in volume and importance, there remains a dearth of knowledge on similarities and differences in “national human research ethics” (NHREs), that is, national ethical guidelines (NEGs), Institutional Review Boards (IRBs), and research stakeholder’ ethical attitudes and behaviors (EABs). We begin to address this situation... More

Abstract: Although international research is increasing in volume and importance, there remains a dearth of knowledge on similarities and differences in “national human research ethics” (NHREs), that is, national ethical guidelines (NEGs), Institutional Review Boards (IRBs), and research stakeholder’ ethical attitudes and behaviors (EABs). We begin to address this situation by reporting upon our experiences in conducting a multinational study into the mental health of children who had a parent/carer in prison. The study was conducted in 4 countries: Germany, Great Britain, Romania, and Sweden. Data on NHREs were gathered via a questionnaire survey, two ethics-related seminars, and ongoing contact between members of the research consortium. There was correspondence but even more so divergence between countries in the availability of NEGs and IRBs and in researcher’ EABs. Differences in NHREs have implications particularly in terms of harmonization but also for ethical philosophy and practice and for research integrity.

Bernard Gallagher · Anne H. Berman · Justyna Bieganski · Adele D. Jones · Liliana Foca · Ben Raikes · Johanna Schiratzki ·Mirjam Urban · Sara Ullman (2015) National Human Research Ethics: A Preliminary Comparative Case Study of Germany, Great Britain, Romania and Sweden Nov 2015 · Ethics & Behavior Research gate: https://www.researchgate.net/publication/283615963_National_Human_Research_Ethics_A_Preliminary... Publisher: http://www.tandfonline.com/doi/abs/10.1080/10508422.2015.1096207?journalCode=hebh20

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How does voluntary ethics improve research?: introducing a community research development initiative (Papers: Flanagan, Tumilty 2015)

Published/Released on November 27, 2015 | Posted by Admin on January 19, 2016 | Keywords: , , , , , , ,

Abstract: Until recently, community organisations in Aotearoa New Zealand (NZ) have not had any avenue for ethical review of research involving human participants unless they were connected to researchers involved with health and disability research (narrowly-defined), or tertiary education institutions. The New Zealand Ethics Committee (NZEC), a recent community research... More

Abstract: Until recently, community organisations in Aotearoa New Zealand (NZ) have not had any avenue for ethical review of research involving human participants unless they were connected to researchers involved with health and disability research (narrowly-defined), or tertiary education institutions. The New Zealand Ethics Committee (NZEC), a recent community research development initiative, has invited organisations to submit their proposals for voluntary ethics review and provides research methodology support where sought. This paper introduces this initiative, describing both its make-up and processes. It also explores the relationship between reviewer-applicant in the NZEC as distinctive to the relationship of reviewer-applicant in traditional ethical review settings, explaining this difference of power relations and philosophy. Those in the community see research ethics review as something to be learned along with research methodology/practice.

Flanagan, P. and Tumilty, E. (2015) How does voluntary ethics improve research? Introducing a community research development initiative, Whanake: The Pacific Journal of Community Development, 1(2), 14-23 http://unitec.researchbank.ac.nz/bitstream/handle/10652/3164/How-does-Voluntary-Ethics-Improve-Research-by-Paul-Flanagan-and-Emma-Tumilty.pdf?sequence=1&isAllowed=y

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Believers versus Believers: The Struggle for Space in Research-ethics Review (Papers: Will C. Van den Hoonaard 2015)

Published/Released on June 21, 2015 | Posted by Admin on January 18, 2016 | Keywords: , ,

Abstract: Regulatory realities in the ethics review of research leave not much space for researchers to fulfill their ethical obligations. The world of ethics committees is inhabited by those who firmly believe that ethics oversight of research is fully justified. The intended target of ethics policies are researchers, many... More

Abstract: Regulatory realities in the ethics review of research leave not much space for researchers to fulfill their ethical obligations. The world of ethics committees is inhabited by those who firmly believe that ethics oversight of research is fully justified. The intended target of ethics policies are researchers, many of whom are also believers, but on the grounds that these policies are unjustified. The dynamics of power between these two worlds are, however, uneven. Agencies and institutions privilege ethics policies in this dynamic; researchers must find their way through this regulatory terrain. Working on my research for The Seduction of Ethics: Transforming the Social Sciences (van den Hoonaard, 2011) I employed participant observation in ethics committees, informal chats, formal interviews, documents, and discussions and decisions about policy. The research revealed chasms between the realm of research-ethics review and that of researchers characterized by deeply-held ideologies about ethics and research. These ideologies represent two different belief systems that view each other with a great deal of suspicion, not unlike two competing religious communities. This paper explores the structural dimensions of these two belief systems as they struggle for space in research-ethics review, and examines where and how these two realms of beliefs are bound together in this space. In many respects, the two realms exemplify the typology of “church” and “sect.” Upholders of the ethics-review system (“church”) see it as the dominant paradigm whereas the followers of the “sect”–researchers– must needs to measure themselves against the dominance of the “church.” Although critical scholarship on the research-ethics review system has come significantly to the fore in recent years, the scholarship emanates only from scholars. There is no auto-critical scholarship that the ethics-review system engages in. Participants in ethics-review conferences work in a bubble.

Will C. Van den Hoonaard (2015) “Believers versus Believers: The Struggle for Space in Research-ethics Review.” Conference Paper, Jun 2015 https://www.researchgate.net/publication/277707825_Believers_versus_Believers_The_Struggle_for...

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Attitudes of the general public towards the disclosure of individual research results and incidental findings from biobank genomic research in Australia (Papers: Jenn Fleming, et al 2015)

Published/Released on December 15, 2015 | Posted by Admin on January 14, 2016 | Keywords: , , , , , , , , , , ,

Abstract: BACKGROUND: Over the past decade, managing the disclosure of findings of genomic research has been the subject of extensive scientific, ethical and legal commentary and is a major challenge for biobanks. AIMS: To examine views of the general Australian public about the disclosure of individual research results (IRR) and incidental findings (IF) from biobank genomic research. METHODS: A national computer assisted telephone interview was conducted amongst a representative sample of (n = 800) adult residents across each Australian State and Territory. RESULTS: The majority of the Australian general public would be interested in receiving IRR and IF if they allowed their blood/tissue to be used in research; 94.4% (n = 800) reported that they would like to receive 'specific information obtained from your sample that may be important to your health or treatment', and 83.4% their 'potential genetic risk of an inherited disease'. Although fewer desired to receive 'any IF that were not directly related to your (potential) diagnosed condition'... More

Abstract: BACKGROUND: Over the past decade, managing the disclosure of findings of genomic research has been the subject of extensive scientific, ethical and legal commentary and is a major challenge for biobanks. AIMS: To examine views of the general Australian public about the disclosure of individual research results (IRR) and incidental findings (IF) from biobank genomic research. METHODS: A national computer assisted telephone interview was conducted amongst a representative sample of (n = 800) adult residents across each Australian State and Territory. RESULTS: The majority of the Australian general public would be interested in receiving IRR and IF if they allowed their blood/tissue to be used in research; 94.4% (n = 800) reported that they would like to receive 'specific information obtained from your sample that may be important to your health or treatment', and 83.4% their 'potential genetic risk of an inherited disease'. Although fewer desired to receive 'any IF that were not directly related to your (potential) diagnosed condition' (70.0%), most would still like to receive IF. A latent class analysis on the desire to receive (or not) all types of results revealed differences in preferences in the information they wished to receive. CONCLUSION: The majority of Australians desire to receive most information arising from research involving their tissue, including IRR and IF. Differences in the extent and type of information they desire to receive are noted. Biobanks must establish strategies to identify information needs of donors, assess research data and communicate with donors and donor families. Processes need to take account of differences in donor preferences and in the clinical or research context(s).

Fleming, J., Critchley, C., Otlowski, M., Stewart, C., Kerridge, I. (2015). Attitudes of the general public towards the disclosure of individual research results and incidental findings from biobank genomic research in Australia. Internal Medicine Journal, 45(12), 1274-1279

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‘But the data is already public’: On the ethics of research in Facebook (Papers: Zimmer M 2010)

Published/Released on June 04, 2010 | Posted by Admin on January 10, 2016 | Keywords: , , , , , ,

"Abstract: In 2008, a group of researchers publicly released profile data collected from the Facebook accounts of an entire cohort of college students from a US university. While good-faith attempts were made to hide the identity of the institution and protect the privacy of the data subjects, the source of... More

"Abstract: In 2008, a group of researchers publicly released profile data collected from the Facebook accounts of an entire cohort of college students from a US university. While good-faith attempts were made to hide the identity of the institution and protect the privacy of the data subjects, the source of the data was quickly identified, placing the privacy of the students at risk. Using this incident as a case study, this paper articulates a set of ethical concerns that must be addressed before embarking on future research in social networking sites, including the nature of consent, properly identifying and respecting expectations of privacy on social network sites, strategies for data anonymization prior to public release, and the relative expertise of institutional review boards when confronted with research projects based on data gleaned from social media."

Zimmer M (2010) ‘But the data is already public’: On the ethics of research in Facebook. Ethics and Information Technology 12(4): 313-325. http://link.springer.com/article/10.1007%2Fs10676-010-9227-5

(Additional reading list item from the updated Booklet 37 of the Griffith University Research Ethics Manual. Perpetual licences are available for use by all researchers within an institution. Institutions have used the GUREM as the basis for producing their own research ethics manual, as a professional development resource and a teaching and learning materials for HDR candidates.)b Less

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‘Anonymity’ of the Facebook dataset – it’s Harvard College – Updated (Zimmer M 2008)

Published/Released on October 03, 2008 | Posted by Admin on January 10, 2016 | Keywords: , , , , ,

"As mentioned the other day, a group of researchers from the Berkman Center for Internet & Society at Harvard University released a dataset of Facebook profile information from an entire cohort (the class of 2009) of college students from “an anonymous, northeastern American university.” (I’ve been engaging with Jason Kaufman,... More

"As mentioned the other day, a group of researchers from the Berkman Center for Internet & Society at Harvard University released a dataset of Facebook profile information from an entire cohort (the class of 2009) of college students from “an anonymous, northeastern American university.” (I’ve been engaging with Jason Kaufman, the PI for this research, on a variety of privacy and research ethics issues in this post and the comments section – please check it out.) Well, I’m pretty sure this “anonymous, northeastern American university” is Harvard College. And I didn’t even have to download the dataset to figure it out. Here’s how."

Zimmer M (2008) More on the ‘Anonymity’ of the Facebook dataset – it’s Harvard College (Updated). Available at: http://www.michaelzimmer.org/2008/10/03/more-on-the-anonymity-of-the-facebook-dataset-its-harvard-college/

(Additional reading list item from the updated Booklet 37 of the Griffith University Research Ethics Manual. Perpetual licences are available for use by all researchers within an institution. Institutions have used the GUREM as the basis for producing their own research ethics manual, as a professional development resource and a teaching and learning materials for HDR candidates.)b Less

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How do Various Notions of Privacy Influence Decisions in Qualitative Internet Research? (Books: Sveningsson M 2009)

Published/Released on March 17, 2008 | Posted by Admin on January 10, 2016 | Keywords: , , , , , , , ,

"Internet Inquiry takes readers into the minds of top internet researchers as they discuss how they have worked through critical challenges as they research online social environments. Rather than providing single "how to" answers, this book presents distinctive and divergent viewpoints on how to think about and conduct qualitative... More

"Internet Inquiry takes readers into the minds of top internet researchers as they discuss how they have worked through critical challenges as they research online social environments. Rather than providing single "how to" answers, this book presents distinctive and divergent viewpoints on how to think about and conduct qualitative internet studies. The various chapters illustrate that good research choices are not random but are deliberate, studied, and internally consistent."

Sveningsson Elm M (2008) How do Various Notions of Privacy Influence Decisions in Qualitative Internet Research? In: Markham A and Baym N (eds) Internet Inquiry: Conversations About Method. Thousand Oaks, CA: Sage, pp. 69-87. https://au.sagepub.com/en-gb/oce/internet-inquiry/book226985

(Additional reading list item from the updated Booklet 37 of the Griffith University Research Ethics Manual. Perpetual licences are available for use by all researchers within an institution. Institutions have used the GUREM as the basis for producing their own research ethics manual, as a professional development resource and a teaching and learning materials for HDR candidates.) Less

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Ethical Decision-Making and Internet Research Recommendations from the AoIR Ethics Working Committee – Version 2 (Papers: Markam and Buchanan 2012)

"INTRODUCTION AND BACKGROUND The work represented in this document emerges from theoretical, empirical, and field research conducted by members of the Association of Internet Researchers, including members of the AoIR Ethics Working Group. The first version of the AoIR Ethical Decision-Making document was released in 2002, after two years of international and cross-disciplinary collaboration.... More

"INTRODUCTION AND BACKGROUND The work represented in this document emerges from theoretical, empirical, and field research conducted by members of the Association of Internet Researchers, including members of the AoIR Ethics Working Group. The first version of the AoIR Ethical Decision-Making document was released in 2002, after two years of international and cross-disciplinary collaboration. The document and its guidelines emerged from a series of extensive dialogues among experienced researchers facing and resolving ethical issues in internet research, philosophers, and other members of AoIR's international, interdisciplinary community. The intention was to develop guidelines from the bottom up -- i.e., out of the day-to-day practices of researchers in a wide range of disciplines, countries and contexts, in contrast to a more usual top-down approach that tries to provide a universal set of norms, principles, practices, and regulations. This approach was crucial because the enterprise of internet research is expansive -- that is, globally informed -- but also situated in innumerable locales. The 2002 document has subsequently received much use, and has been cited and used in a wide range of publications by a diverse number of disciplines. The AoIR Guidelines document has also been used by research ethics boards (REBs) and institutional review boards (IRBs) when making decisions about internet research-based protocols.1 Purpose and Audience While the first AoIR document enjoyed extensive use, much has changed in the field of Internet Studies since 2002. The scope and contexts of internet research have been dramatically expanded through the continuing global diffusion of the internet into nearly every country in the world, as facilitated through a growing array of devices (including game consoles, internet-enabled phones and other mobile devices) and ever-increasing bandwidth; rapidly expanding suites of new communication applications; and the increasingly seamless interweaving of online and offline activities and experiences. Alongside these developments, the literature of internet research ethics has grown considerably, providing us with a far more extensive range of theoretical resources and practical examples to help recognize and guide ethical reflection."

Markham A and Buchanan E (2012) Ethical Decision-Making and Internet Research Recommendations from the AoIR Ethics Working Committee (Version 2.0). Available at: http://www.aoir.org/reports/ethics2.pdf (accessed 23 December 2013)

(Additional reading list item from the updated Booklet 37 of the Griffith University Research Ethics Manual. Perpetual licences are available for use by all researchers within an institution. Institutions have used the GUREM as the basis for producing their own research ethics manual, as a professional development resource and a teaching and learning materials for HDR candidates.) Less

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Twitter Vs. Facebook Vs. Instagram: Who Is the Target Audience? (Papers: Walton J 2015)

Published/Released on October 02, 2015 | Posted by Admin on January 10, 2016 | Keywords: ,

"Social media helps billions of people worldwide stay connected, and Facebook, Inc. (NASDAQ: FB), Twitter, Inc. (NYSE: TWTR) and Instagram, owned by Facebook, are among the most successful brands, each appealing to different demographics. With over 1 billion users worldwide, Facebook tends to appeal to adults, with 47% of... More

"Social media helps billions of people worldwide stay connected, and Facebook, Inc. (NASDAQ: FB), Twitter, Inc. (NYSE: TWTR) and Instagram, owned by Facebook, are among the most successful brands, each appealing to different demographics. With over 1 billion users worldwide, Facebook tends to appeal to adults, with 47% of its users over the age of 35. Twitter has over 271 million active users who tend to be younger, with 35% between the ages of 18 and 29. Of Instagram’s 200 million active users, 53% are between the ages of 18 and 29. Earth Is Facebook’s Target Market Since a substantial portion of the world’s population is actively using Facebook, “Who isn’t Facebook’s target market?” may be an easier question to answer. As of 2015, 72% of online American adults use Facebook. The site is especially popular among online women, 77% of whom are users of the site. In addition, 82% of online adults between 18 to 29 use Facebook, along with 79% of those 30 to 49, 64% of those 50 to 64 and 48% of those 65 and older. While its user base is dominated by those over 25, Facebook still has over 50 million users under the age of 25. Facebook is more popular with middle-aged adults than other social networks. In the U.S., the average monthly active user of Facebook was 40 years old in 2014. Facebook is popular among those in rural, suburban and urban areas, and those at every income level and education background. There is also not much of a difference in usage among different ethnic backgrounds. Facebook has the most engaged users; 70% log on daily, including 43% who do so several times a day. The bottom line is, basically everyone who uses the Internet as a means of communication is on Facebook regularly."

Walton J (2015) Twitter Vs. Facebook Vs. Instagram: Who Is the Target Audience?. Retrieved from: http://www.investopedia.com/articles/markets/100215/twitter-vs-facebook-vs-instagram-who-target-audience.asp (accessed 7 December 2015)

(Reference from the updated Booklet 37 of the Griffith University Research Ethics Manual. Perpetual licences are available for use by all researchers within an institution. Institutions have used the GUREM as the basis for producing their own research ethics manual, as a professional development resource and a teaching and learning materials for HDR candidates.) Less

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When confidentiality assurances fail relational informants (Papers: Tolich M 2004)

Published/Released on March 15, 2004 | Posted by Admin on January 10, 2016 | Keywords: , , ,

Abstract: This research note explores a limit in the principle of confidentiality, demonstrating how informants' connected relationships can lead to impaired or diminished autonomy. Insiders may recognize what other insiders have said to a researcher in a private interview. Internal confidentiality is distinct from external confidentiality, which assures protection against identification by those who were not subjects of the research.

Tolich M (2004), ‘Internal confidentiality: When confidentiality assurances fail relational informants’, Qualitative Sociology, vol. 27, no. 1, pp. 101–106 http://link.springer.com/article/10.1023%2FB%3AQUAS.0000015546.20441.4a

(Reference from the updated Booklet 37 of the Griffith University Research Ethics Manual. Perpetual licences are available for use by all researchers within an institution. Institutions have used the GUREM as the basis for producing their own research ethics manual, as a professional development resource and a teaching and learning materials for HDR candidates.)

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How Facebook Killed the Internet (Papers: Rovics D 2014)

Published/Released on December 24, 2014 | Posted by Admin on January 10, 2016 | Keywords: , ,

"Facebook killed the internet, and I’m pretty sure that the vast majority of people didn’t even notice. I can see the look on many of your faces, and hear the thoughts. Someone’s complaining about Facebook again. Yes, I know it’s a massive corporation, but it’s the platform we’re all using.... More

"Facebook killed the internet, and I’m pretty sure that the vast majority of people didn’t even notice. I can see the look on many of your faces, and hear the thoughts. Someone’s complaining about Facebook again. Yes, I know it’s a massive corporation, but it’s the platform we’re all using. It’s like complaining about Starbucks. After all the independent cafes have been driven out of town and you’re an espresso addict, what to do? What do you mean “killed”? What was killed? I’ll try to explain. I’ll start by saying that I don’t know what the solution is. But I think any solution has to start with solidly identifying the nature of the problem."

Rovics D (2014). How Facebook Killed the Internet. Retrieved from: http://www.counterpunch.org/2014/12/24/how-facebook-killed-the-Internet/ (accessed 9 December 2015)

(Reference from the updated Booklet 37 of the Griffith University Research Ethics Manual. Perpetual licences are available for use by all researchers within an institution. Institutions have used the GUREM as the basis for producing their own research ethics manual, as a professional development resource and a teaching and learning materials for HDR candidates.) Less

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When online shaming spirals out of control (Papers: Ronson J 2015)

Published/Released on June 02, 2015 | Posted by Admin on January 10, 2016 | Keywords: , ,

"Twitter gives a voice to the voiceless, a way to speak up and hit back at perceived injustice. But sometimes, says Jon Ronson, things go too far. In a jaw-dropping story of how one un-funny tweet ruined a woman's life and career, Ronson shows how online commenters can end... More

"Twitter gives a voice to the voiceless, a way to speak up and hit back at perceived injustice. But sometimes, says Jon Ronson, things go too far. In a jaw-dropping story of how one un-funny tweet ruined a woman's life and career, Ronson shows how online commenters can end up behaving like a baying mob — and says it's time to rethink how we interact online." [embed]https://www.ted.com/talks/jon_ronson_what_happens_when_online_shaming_spirals_out_of_control?language=en[/embed]

Ronson J (2015, June). When online shaming spirals out of control [Video file]. Retrieved from https://www.ted.com/talks/jon_ronson_what_happens_when_online_shaming_spirals_out_of_control?language=en

(Reference from the updated Booklet 37 of the Griffith University Research Ethics Manual. Perpetual licences are available for use by all researchers within an institution. Institutions have used the GUREM as the basis for producing their own research ethics manual, as a professional development resource and a teaching and learning materials for HDR candidates.) Less

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Ethical Issues in Conducting Qualitative Research in Online Communities (Papers: Roberts L 2015)

Published/Released on August 23, 2015 | Posted by Admin on January 10, 2016 | Keywords: , , , , , , , , , ,

Abstract: Increasingly, psychologists are extending their research to include online methods of data collection. Psychologists’ use of qualitative data obtained or generated online for research purposes poses unique challenges because of the “traceability” of quotes, often sensitive content of data and potential impact on both individuals and online communities. In... More

Abstract: Increasingly, psychologists are extending their research to include online methods of data collection. Psychologists’ use of qualitative data obtained or generated online for research purposes poses unique challenges because of the “traceability” of quotes, often sensitive content of data and potential impact on both individuals and online communities. In this article, working within a framework that goes beyond “procedural ethics” to examine “ethics in practice,” ethical issues associated with conducting qualitative research within online communities are identified. These include tensions over public/private space, authorship versus human research participants, informed consent, anonymity and pseudonymity, covert research, deceptive research identities, reactions to being researched, and the quality of data obtained. Prior to conducting qualitative research in online communities, researchers have an ethical obligation to identify and weigh possible risks and benefits to both the community and community members. Sensitivity to the specific online community and continued ethical consideration throughout the conduct and reporting of the research are required.

Roberts L D (2015).“Ethical Issues in Conducting Qualitative Research in Online Communities.” Qualitative Research in Psychology 12 (3): 314-325. http://espace.library.curtin.edu.au/R?func=dbin-jump-full&local_base=gen01-era02&object_id=230825

(Reference from the updated Booklet 37 of the Griffith University Research Ethics Manual. Perpetual licences are available for use by all researchers within an institution. Institutions have used the GUREM as the basis for producing their own research ethics manual, as a professional development resource and a teaching and learning materials for HDR candidates.) Less

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The Academic Benefits of Twitter (Paper: McGranahan M 2013)

Published/Released on May 08, 2013 | Posted by Admin on January 10, 2016 | Keywords:

"Yesterday someone I follow (@bacigalupe) posted a link to a Digital Sociology post titled “Can academics manage without Twitter?” My answer was: of course they can. Academics do not need to be on Twitter, and yet there are some very real benefits to Twitter. What are they, you ask?... More

"Yesterday someone I follow (@bacigalupe) posted a link to a Digital Sociology post titled “Can academics manage without Twitter?” My answer was: of course they can. Academics do not need to be on Twitter, and yet there are some very real benefits to Twitter. What are they, you ask? In the order I posted them (and with the original 140 character limitations of syntax preserved), here are five academic benefits I’ve experienced through using Twitter: #1: learning about new research, publications, conferences, conversations #2: community-building, following/connecting with colleagues around the world in your own + cognate fields"

McGranahan M (2013) The Academic Benefits of Twitter Retrieved from http://savageminds.org/2013/05/08/the-academic-benefits-of-twitter/ (accessed 7 December 2015)

(Reference from the updated Booklet 37 of the Griffith University Research Ethics Manual. Perpetual licences are available for use by all researchers within an institution. Institutions have used the GUREM as the basis for producing their own research ethics manual, as a professional development resource and a teaching and learning materials for HDR candidates.) Less

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Experimental evidence of massive-scale emotional contagion through social networks (Papers: Kramer A and Hancock J 2014)

Published/Released on March 25, 2014 | Posted by Admin on January 10, 2016 | Keywords: , , , , , , ,

Abstract: Emotional states can be transferred to others via emotional contagion, leading people to experience the same emotions without their awareness. Emotional contagion is well established in laboratory experiments, with people transferring positive and negative emotions to others. Data from a large real-world social network, collected over a 20-y period... More

Abstract: Emotional states can be transferred to others via emotional contagion, leading people to experience the same emotions without their awareness. Emotional contagion is well established in laboratory experiments, with people transferring positive and negative emotions to others. Data from a large real-world social network, collected over a 20-y period suggests that longer-lasting moods (e.g., depression, happiness) can be transferred through networks [Fowler JH, Christakis NA (2008) BMJ 337:a2338], although the results are controversial. In an experiment with people who use Facebook, we test whether emotional contagion occurs outside of in-person interaction between individuals by reducing the amount of emotional content in the News Feed. When positive expressions were reduced, people produced fewer positive posts and more negative posts; when negative expressions were reduced, the opposite pattern occurred. These results indicate that emotions expressed by others on Facebook influence our own emotions, constituting experimental evidence for massive-scale contagion via social networks. This work also suggests that, in contrast to prevailing assumptions, in-person interaction and nonverbal cues are not strictly necessary for emotional contagion, and that the observation of others’ positive experiences constitutes a positive experience for people.

Kramer A D., Guillory, J E., & Hancock J T (2014). Experimental evidence of massive-scale emotional contagion through social networks. Proceedings of the National Academy of Sciences, 111(24), 8788-8790. http://www.pnas.org/content/111/24/8788.full

(Reference from the updated Booklet 37 of the Griffith University Research Ethics Manual. Perpetual licences are available for use by all researchers within an institution. Institutions have used the GUREM as the basis for producing their own research ethics manual, as a professional development resource and a teaching and learning materials for HDR candidates.)

Also see 1. (25/03/14) Experimental evidence of massive-scale emotional contagion through social networks 2. (01/04/14) Facebook fiasco: was Cornell's study of ‘emotional contagion’ an ethics breach?  3. (10/05/15) Social media personhood as a challenge to research ethics: Exploring the case of the Facebook experiment 4. (10/05/15) Untangling research and practice: What Facebook's "emotional contagion" study teaches us 5. (20/05/16) Scientists are just as confused about the ethics of big-data research as you 6. (17/06/16) Are Research Ethics Obsolete In The Era Of Big Data?

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Digital, Social & Mobile Worldwide in 2015 (Papers: Kemp S 2015)

Published/Released on January 22, 2015 | Posted by Admin on January 10, 2016 | Keywords: ,

"2014 was a landmark year for growth across all things digital, and We Are Social’s new Digital, Social and Mobile in 2015 report indicates that this year will see even more impressive numbers. Including stats for more than 240 countries around the world, and profiling 30 of the world’s biggest... More

"2014 was a landmark year for growth across all things digital, and We Are Social’s new Digital, Social and Mobile in 2015 report indicates that this year will see even more impressive numbers. Including stats for more than 240 countries around the world, and profiling 30 of the world’s biggest economies in detail, this report is the most comprehensive, free compendium of up-to-date digital statistics and data you’ll find. So what do its 376 pages reveal?"

Kemp S (2015) Digital, Social & Mobile Worldwide in 2015 Retrieved from http://wearesocial.com.au/blog/2015/01/22/digital-social-mobile-worldwide-2015/ (accessed 1 December 2015)

(Reference from the updated Booklet 37 of the Griffith University Research Ethics Manual. Perpetual licences are available for use by all researchers within an institution. Institutions have used the GUREM as the basis for producing their own research ethics manual, as a professional development resource and a teaching and learning materials for HDR candidates.) Less

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#SocialEthics: A guide to embedding ethics in social media research (Papers: Evans et al 2015)

"This report on social media research ethics is a part of the Wisdom of the Crowd project, sponsored by Innovate UK, the UK's innovation agency, with funding contributions from the TSB, the EPSRC and the ESRC. lpsos MORI, CASM Consulting LLP, Demos and University of Sussex have collaborated in this... More

"This report on social media research ethics is a part of the Wisdom of the Crowd project, sponsored by Innovate UK, the UK's innovation agency, with funding contributions from the TSB, the EPSRC and the ESRC. lpsos MORI, CASM Consulting LLP, Demos and University of Sussex have collaborated in this project to critically examine commercial possibilities for social media research. [colored_box]One of the focuses of the Wisdom of the Crowd project is to examine the ethical landscape surrounding aggregated social media research. In spring 2015, the first publication of this ethics strand contained a review of the legal and regulatory framework for using social media in market research2. This second and final report builds on these findings, presenting our conclusions from quantitative and qualitative primary research with stakeholders and social media users, and outlining our recommendations for how the research industry should look to proceed if it is to be at the forefront of using social media data in an ethical way. . The scope of the ethical review is focussed on large-scale, aggregated analysis of social media data sometimes referred to as 'social l istening'. We regard this kind of research as potentially fruitful in the social insight it can be provide, and we are generally excited about the possibilities for this a new social research methodology; however, we are concerned that the guidelines for ethical best practice are incoherent and inadequate. The volume of data collected through this method presents barriers to traditional ethical research frameworks: this new kind of research also fits into the wider ethical context of using algorithms to analyse people's personal data. Consideration therefore needs to be given to how this kind of research can be conducted ethically." .

Harry Evans; Steve Ginnis; Jamie Bartlett (2015) #SocialEthics: A guide to embedding ethics in social media research. Retrieved from: https://www.ipsos.com/sites/default/files/migrations/en-uk/files/Assets/Docs/Publications/im-demos-social-ethics-in-social-media-research-summary.pdf  (accessed 13 November 2018). .

(Reference from the updated Booklet 37 of the Griffith University Research Ethics Manual. Perpetual licences are available for use by all researchers within an institution. Institutions have used the GUREM as the basis for producing their own research ethics manual, as a professional development resource and a teaching and learning materials for HDR candidates.) Less

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The History of Social Media (Papers: Digital Trends Staff 2014)

Published/Released on August 05, 2014 | Posted by Admin on January 9, 2016 | Keywords:

"Long before it became the commercialized mass information and entertainment juggernaut it is today, long before it was accessible to the general public, and certainly many years before Al Gore claimed he “took the initiative in creating” it, the Internet – and its predecessors – were a focal point... More

"Long before it became the commercialized mass information and entertainment juggernaut it is today, long before it was accessible to the general public, and certainly many years before Al Gore claimed he “took the initiative in creating” it, the Internet – and its predecessors – were a focal point for social interactivity. Granted, computer networking was initially envisioned in the heyday of The Beatles as a military-centric command and control scheme. But as it expanded beyond just a privileged few hubs and nodes, so too did the idea that connected computers might also make a great forum for discussing mutual topics of interest, and perhaps even meeting or renewing acquaintances with other humans. In the 1970s, that process began in earnest. Mullets reigned supreme in the late ‘70s and early ‘80s; computers were a far rarer commodity. Machine languages we