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Guidance and resource material

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Research: Data Protection Impact Assessment (DPIA) (Guidance: SOAS UL | November 2018)

Published/Released on November 14, 2018 | Posted by Admin on May 2, 2019 | Keywords: , , , ,

Table of Contents Research: Data Protection Impact Assessment (DPIA) .... 1 1. Requirement .... 3 2. The Nature of the DPIA .... 3 3. Screening Evaluation .... 4 4. Content and scope .... 4 5. Process .... 5 6. Unmitigated High-Risks .... 5 Appendix 1: Screening Evaluation .... 7 Appendix 2: Data Protection Impact... More

Table of Contents Research: Data Protection Impact Assessment (DPIA) .... 1 1. Requirement .... 3 2. The Nature of the DPIA .... 3 3. Screening Evaluation .... 4 4. Content and scope .... 4 5. Process .... 5 6. Unmitigated High-Risks .... 5 Appendix 1: Screening Evaluation .... 7 Appendix 2: Data Protection Impact Assessment (DPIA) Template ....8 [colored_box]1. Requirement 1.1 The Data Protection Impact Assessment (DPIA) is a requirement that is set out in both the General Data Protection Regulation (GDPR) and the Data Protection Act (DPA) 2018.1 . 1.2 The Research Office has prepared the guide set out here as it relates to Research and it forms part of the overall Research Ethics process. It is formulated in line with SOAS’ corporate approach as set out in the Data Protection Impact Assessment Guide. .

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Guidance for Researchers on the Implications of the General Data Protection Regulation and the Data Protection Act 2018 (Guidance: UCL | May 2018)

Published/Released on May 30, 2018 | Posted by Admin on April 30, 2019 | Keywords: , , , , , , ,

Introduction This guidance note has been compiled to provide an overview of data protection key points for researchers, in line with the General Data Protection Regulation (GDPR) and the new UK Data Protection Act 2018. When referring to both, this guidance note will use the term... More

Introduction This guidance note has been compiled to provide an overview of data protection key points for researchers, in line with the General Data Protection Regulation (GDPR) and the new UK Data Protection Act 2018. When referring to both, this guidance note will use the term ‘new data protection legislation’. This document was last updated on 24 May 2018. It may be updated further as relevant guidance on the issues raised is published by the UK Information Commissioner’s Office (ICO). A. Scope This guidance applies to researchers who are processing personal data, i.e. information relating to an identified or identifiable living person. Note that ‘processing’ means any operation - collecting, storing, using, transferring, disclosing or destroying - performed on personal data.

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The Ethics of Learning Analytics in Australian Higher Education. A Discussion Paper (The University of Melbourne | March 2019)

Overview This project brought together learning analytics experts from across Australia to explore key ethical issues relating to the development and use of learning analytics in higher education. The result of these discussions was a discussion paper that provides an outline of seven ethical principles as... More

Overview This project brought together learning analytics experts from across Australia to explore key ethical issues relating to the development and use of learning analytics in higher education. The result of these discussions was a discussion paper that provides an outline of seven ethical principles as well as practical considerations associated with the use of learning analytics.

Objective

The ever-increasing availability of data about student activities in educational environments presents many opportunities for the improvement of learning and teaching through the use of learning analytics. In applying analytics, there is an obligation that educators and institutions ensure that data and analysis techniques are used appropriately. The range of ethical considerations that educational institutions must face is complex, and many institutions are still formulating their approach to ensuring ethical practice in this field. The objective of this project was to draw together contemporary research and current practice in the area of ethics and learning analytics, and use this to produce a discussion paper that provides guidance to a range of higher education stakeholders including students, educators, researchers, and senior leaders.

Corrin, L., Kennedy, G., French, S., Buckingham Shum S., Kitto, K., Pardo, A., West, D., Mirriahi, N., & Colvin, C. (2019). The Ethics of Learning Analytics in Australian Higher Education. A Discussion Paper. https://melbourne-cshe.unimelb.edu.au/research/research-projects/edutech/the-ethical-use-of-learning-analytics

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Research Ethics Policy Note no. 12 – Research Involving Illegal Activities

Published/Released on December 04, 2018 | Posted by Admin on February 7, 2019 | Keywords: , , , , ,

The University of Sheffield Research Ethics Policy Note no. 12 Research Involving Illegal Activities

This is a complex area. There is a long tradition of social science research into illegal activity that has enriched public debate about crime and a range... More

The University of Sheffield Research Ethics Policy Note no. 12 Research Involving Illegal Activities

This is a complex area. There is a long tradition of social science research into illegal activity that has enriched public debate about crime and a range of other public issues. Similarly, researchers in psychology or medicine, for example, might in the course of their research learn about criminal activity. But what is the legal and ethical position of the researcher in such circumstances? 1. LEGAL RESPONSIBILITIES Researchers have the same legal obligations that they would have in any other context, as citizens or legal residents. As a private member of society, there is, however, no general legal obligation in the United Kingdom to report to the relevant authorities all illegal activity that one observes or learns about. However, there may be moral obligations to report in the following circumstances:

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Research ethics: How to Treat People who Participate in Research – NIH (Ezekiel Emanuel, et al | nd)

[colored_box]Introduction In Alabama from the 1930s to 1970s, researchers recruited black men to participate in a study of syphilis – a terrible disease that can cause disability and death. The researchers told the men participating that they were getting medical treatment, even though they were not.... More

[colored_box]Introduction In Alabama from the 1930s to 1970s, researchers recruited black men to participate in a study of syphilis – a terrible disease that can cause disability and death. The researchers told the men participating that they were getting medical treatment, even though they were not. in fact, when the study began syphilis was untreatable. the researchers instead wanted to study what syphilis does to the body over time. after World War ii, when a treatment – penicillin – was available for syphilis, the researchers kept the men from receiving it because they wanted to study what happened as the disease got worse. What makes this study – the Tuskegee Syphilis Study – unethical? What is wrong with the way the researchers acted? . A human exercise experiment or class survey designed by a student for a science fair seems very different from the tuskegee syphilis study. however, is there anything about student studies that might raise ethical concerns? . Human subjects research is exactly what it sounds like. it is research that uses people as the subjects of experiments or studies. it can include giving people new drugs, doing tests on their blood, even having them take surveys. Researchers have a duty to treat the people they study ethically and respectfully. in particular, it is important to make sure that researchers do not exploit their subjects. Exploitation is addressed further on page 9. unfortunately, as the Tuskegee Syphilis Study shows, some people were treated. . Unfortunately, as the Tuskegee Syphilis Study shows, some people were treated horribly during research studies in the past. German and Japanese researchers, for instance, conducted terrible experiments on prisoners during World War ii. Many other incidents took place before the 1970s, when some u.s. doctors experimented on hospital patients without telling them or failed to provide medicines that would have treated potentially deadly diseases. Today, there are ethical principles for research to help ensure that people who participate are not harmed and that the scandals of the past do not occur again.these principles even apply to student research projects with humans, and they are important for you to think about as you design experiments.

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TABLE OF CONTENTS Introduction 3 Introduction to the 7 Principles 4 Other Important Concepts and Issues 8 Applying the Principles 10 Further Reading

Emanuel, E, Abodler, E. and Stunkel, L. (nd) Research ethics: How to Treat People who Participate in Research. US National Institutes of Health. https://bioethics.nih.gov/education/FNIH_BioethicsBrochure_WEB.PDF

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Sensitive Data can be Shared (Michael Martin | 2014)

A discussion of the legal and ethical context of publishing and sharing sensitive data with two experts who contributed to the ANDS Guide to Publishing & Sharing Sensitive Data.

Provides practical advice about sharing human data as part of ethical research practice (YouTube,... More

A discussion of the legal and ethical context of publishing and sharing sensitive data with two experts who contributed to the ANDS Guide to Publishing & Sharing Sensitive Data.

Provides practical advice about sharing human data as part of ethical research practice (YouTube, 40 min) Baden Appleyard, Barrister, also offers insight into legal requirements.

Martin, M (2014) Sensitive Data can be Shared. https://www.youtube.com/watch?v=FopQez8P-lU&feature=youtu.be

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Keeping research on track II

This guideline aims to support research participants, Aboriginal and Torres Strait Islander Peoples and communities to:

  • Make decisions that ensure the research journey respects Aboriginal and Torres Strait Islander Peoples’... More

    This guideline aims to support research participants, Aboriginal and Torres Strait Islander Peoples and communities to:

    • Make decisions that ensure the research journey respects Aboriginal and Torres Strait Islander Peoples’ and communities’ shared values, diversity, priorities, needs and aspirations.
    • Make decisions that ensure the research journey benefits Aboriginal and Torres Strait Islander people and communities as well as researchers and other Australians.
    • Recognise and understand their rights and responsibilities in being involved in all aspects of research.
    • Better understand the steps involved in making research ethical.
    The information in this guideline comes from two key national publications which set out the requirements for the ethical conduct of research:
    • National Statement on Ethical Conduct in Human Research (the National Statement) The National Statement is the principal guideline setting out the requirements for the ethical design, review and conduct of all human research in Australia. The National Statement is about four main principles: respect; research merit and integrity; justice; and beneficence. The National Statement provides guidance on the ethical considerations that are relevant to the way that research is designed, reviewed and conducted.

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Genome editing and human reproduction (Nuffield Council on Bioethics | July 2018)

Published/Released on July 02, 2018 | Posted by Admin on July 19, 2018 | Keywords: , , , , , , , ,

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NDA (Ireland) Ethical Guidance for Research with People with Disabilities (Guidance | 2009)

"As the field of disability research in Ireland expands, it is vital that quality in such research be ensured. In accordance with its statutory role in relation to disability research, the National Disability Authority offers new ethical guidelines for disability research as a resource to assist the expansion of quality... More

"As the field of disability research in Ireland expands, it is vital that quality in such research be ensured. In accordance with its statutory role in relation to disability research, the National Disability Authority offers new ethical guidelines for disability research as a resource to assist the expansion of quality disability research in Ireland. The guidelines have been drawn up through consideration of best practice internationally alongside a wide process of consultation, in particular consultation with people with disabilities. These guidelines are designed to be used by those involved in funding, conducting, or managing disability research, most especially that which involves people with disabilities as participants. They do not replace existing general ethical guidelines in social and policy research but supplement them by providing an outline of key issues from a disability perspective."

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TABLE OF CONTENTS 1. INTRODUCTION TO DISABILITY RESEARCH AND ETHICS 5 2. ETHICAL GUIDANCE ON RESEARCH WITH PEOPLE WITH DISABILITIES 11 3. CORE VALUES FOR RESEARCH WITH PEOPLE WITH DISABILITIES 17 4. GUIDANCE FOR GOOD PRACTICE IN RESEARCH WITH PEOPLE WITH DISABILITIES 23 5. CASE STUDIES 45 6 REFERENCES 55 APPENDIX 1 69 ENDNOTES 75   Less

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Building an Effective Research Safety Protocol and Emergency Exit Strategies – SSRC (Angelica Duran-Martinez | June 2014)

Social Science Research Council Papers DRUGS SECURITY AND DEMOCRACY PROGRAM DSD WORKING PAPERS ON RESEARCH SECURITY NO.4

This examination of strategies to minimize risks and identify dangerous situations for researchers in conflict and crime-ridden areas focuses on the design of... More

Social Science Research Council Papers DRUGS SECURITY AND DEMOCRACY PROGRAM DSD WORKING PAPERS ON RESEARCH SECURITY NO.4

This examination of strategies to minimize risks and identify dangerous situations for researchers in conflict and crime-ridden areas focuses on the design of a flexible safety and exit protocol that can help researchers return home safely. Safety depends on how scholars gain access to research locations, introduce their work to potential subjects, and pose questions to them. Naturally, defining what security is and determining levels of danger is a subjective and fluid process contingent on factors intrinsic to the project. The aim here is to help researchers think through security issues systematically and build a working written protocol to deal with emergency situations they may encounter. The discussion first addresses risk assessment and its role in building effective safety protocols. Risk assessment depends on variables such as research location, type and duration of research, and personal characteristics of the researcher. The second section examines the role of pre-fieldwork preparation in researcher safety, and the third analyzes the role of routine field safety procedures in maintaining awareness of evolving security threats and exit strategies. Ultimately, this examination seeks to go beyond how to conduct research safely, emphasizing instead how to increase the chances of the researcher’s safe return home. Thus, the fourth section builds on sound safety procedures to outline the basic elements of exit protocols that can help researchers and their supporters obtain or render aid under emergency circumstances. The conclusion presents a rubric for creating and thinking through safety before, during, and after field research. This guide is intended to help researchers think through crucial questions regarding risks and safety. They do not need to consider every issue mentioned here but should focus on those that appear more relevant to their projects. Scholars can define safety according to their own professional needs and develop exit protocols that can assist them in navigating both the ordinary fear and danger and the more extreme threats that affect their research locations...

Duran-Martinez, Angelica (2014) Building an Effective Research Safety Protocol and Emergency Exit Strategies. SSRC Paper. Publishers (Creative Commons): http://webarchive.ssrc.org/working-papers/DSD_ResearchSecurity_04_Duran-Martinez.pdf

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Security Considerations for Conducting Fieldwork In Highly Dangerous Places or on Highly Dangerous Subjects – SSRC (Vanda Felbab-Brown | June 2014)

Published/Released on June 07, 2014 | Posted by Admin on June 14, 2018 | Keywords: , , , , , , ,

DRUGS, SECURITY AND DEMOCRACY PROGRAM DSD WORKING PAPERS ON RESEARCH SECURITY: NO. 3

Over the last generation, activists, journalists, and researchers working in Latin America have increasingly faced the challenge of operating in areas affected by chronic police and non-state violence. Further, rising crime... More

DRUGS, SECURITY AND DEMOCRACY PROGRAM DSD WORKING PAPERS ON RESEARCH SECURITY: NO. 3

Over the last generation, activists, journalists, and researchers working in Latin America have increasingly faced the challenge of operating in areas affected by chronic police and non-state violence. Further, rising crime rates are leading a growing number of scholars to conduct research on high-risk topics, which involves gathering data on communities that experience conflict, writing and publishing on these difficult and sensitive issues, and developing and implementing programs to deal with the needs of communities affected by violence as well as the wider conflicts in which those communities are embedded. Despite these trends, the literature on safe practices for those working in high-risk environments remains thin. The DSD Working Papers on Research Security series seeks to address this deficit by examining a range of research security concerns, providing a framework to help those working in the region consider how they can enhance their own safety as well as the safety of their associates and research participants. The DSD Program is funded by the Open Society Foundations. The program is a partnership between OSF, the SSRC, Universidad de los Andes in Bogotá, Colombia, and Centro de Investigación y Docencia Económicas in Mexico.

Felab-Brown, V. (2014) Security considerations for conducting fieldwork in highly dangerous places or on highly dangerous subjects. DSD Working Papers on Research Security. SSRC Drugs, Security and Democracy Program. Creative Commons: http://webarchive.ssrc.org/working-papers/DSD_ResearchSecurity_03_Felbab-Brown.pdf

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‘How was Your Trip?’ Self-care for Researchers Working and Writing on Violence (Kimberly Theidon | 2014)

Published/Released on April 02, 2014 | Posted by Admin on June 12, 2018 | Keywords: , , , , , , ,

Social Science Research Council DRUGS, SECURITY AND DEMOCRACY PROGRAM | DSD WORKING PAPERS ON RESEARCH SECURITY: NO. 2

ABOUT THE PROGRAM The Drugs, Security and Democracy (DSD) Program strives to create a stronger, more systematized knowledge base on... More

Social Science Research Council DRUGS, SECURITY AND DEMOCRACY PROGRAM | DSD WORKING PAPERS ON RESEARCH SECURITY: NO. 2

ABOUT THE PROGRAM The Drugs, Security and Democracy (DSD) Program strives to create a stronger, more systematized knowledge base on drugs, security, and democracy in Latin America and the Caribbean; to build capacity—both institutional and individual—by supporting relevant research; and to encourage policy-relevant, evidence-based research that could lead to the development of alternatives to present-day drug policies. Support is provided for research across a variety of disciplines—anthropology, criminology, economics, history, international relations, journalism, legal studies, political science, public health, public policy, sociology, and other related fields—to create a network of scholars interested in developing alternative approaches to drug policy. ABOUT THE SERIES Over the last generation, activists, journalists, and researchers working in Latin America have increasingly faced the challenge of operating in areas affected by chronic police and non-state violence. Further, rising crime rates are leading a growing number of scholars to conduct research on high-risk topics, which involves gathering data on communities that experience conflict, writing and publishing on these difficult and sensitive issues, and developing and implementing programs to deal with the needs of communities affected by violence as well as the wider conflicts in which those communities are embedded. Despite these trends, the literature on safe practices for those working in high-risk environments remains thin. The DSD Working Papers on Research Security series seeks to address this deficit by examining a range of research security concerns, providing a framework to help those working in the region consider how they can enhance their own safety as well

Theidon, K. (2014) ‘How was Your Trip?’ Self-care for Researchers Working and Writing on Violence. Drugs Security and Democracy Program DSD Working Papers in Research Security. New York: Social Science Research Council

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Qualitative Research in Dangerous Places: Becoming an ”Ethnographer” of Violence and Personal Safety (Guidance: Social Science Research Council | 2016)

Social Science Research Council | Working Papers

"Over the last generation, activists, journalists, and researchers working in Latin America have increasingly faced the challenge of operating in areas affected by chronic police and non-state violence. Further, rising crime rates are leading a growing number... More

Social Science Research Council | Working Papers

"Over the last generation, activists, journalists, and researchers working in Latin America have increasingly faced the challenge of operating in areas affected by chronic police and non-state violence. Further, rising crime rates are leading a growing number of scholars to conduct research on high-risk topics, which involves gathering data on communities that experience conflict, writing and publishing on these difficult and sensitive issues, and developing and implementing programs to deal with the needs of communities affected by violence as well as the wider conflicts in which those communities are embedded. Despite these trends, the literature on safe practices for those working in high-risk environments remains thin. The DSD Working Papers on Research Security series seeks to address this deficit by examining a range of research security concerns, providing a framework to help those working in the region consider how they can enhance their own safety as well as the safety of their associates and research participants."

Goldstein, D. (2016) Qualitative Research in Dangerous Places: Becoming an ‘Ethnographer’ of Violence and Personal Safety. Brooklyn, NY: Social Science Research Council. Publisher (Open Access): http://webarchive.ssrc.org/working-papers/DSD_ResearchSecurity_01_Goldstein.pdf

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Guidance and supplementary guidance: Safety monitoring and reporting in clinical trials involving therapeutic goods (Guidance: NHMRC | 2018)

Published/Released on February 23, 2018 | Posted by Admin on May 3, 2018 | Keywords: , , , , , , , , ,

The National Statement on Ethical Conduct in Human Research 2007 recognises that sponsors, investigators/researchers, institutions and HRECs all have relevant responsibilities. This Guidance, which replaces the Australian Health Ethics Committee’s 2009 Position Statement, is designed to clarify the responsibilities of all parties in relation to reports of adverse events (AE), including... More

The National Statement on Ethical Conduct in Human Research 2007 recognises that sponsors, investigators/researchers, institutions and HRECs all have relevant responsibilities. This Guidance, which replaces the Australian Health Ethics Committee’s 2009 Position Statement, is designed to clarify the responsibilities of all parties in relation to reports of adverse events (AE), including serious adverse events (SAEs) and suspected unexpected serious adverse reactions (SUSARs), occurring in clinical trials for which institutions are responsible and for which the Human Research Ethics Committees (HRECs) have reviewed and approved. This guidance specifically addresses the monitoring, collection and reporting of adverse events and adverse reactions that occur in clinical trials involving investigational medicinal products (IMPs) and investigational medical devices (IMDs) for trials conducted under the Clinical Trial Exemption (CTX) or Clinical Trial Notification (CTN) schemes. The Guidance is also broadly applicable to all clinical trials involving therapeutic goods. NHMRC has developed the following documents to supplement the Guidance and to provide further advice for non-commercial and commercially-sponsored clinical trials involving therapeutic goods. This supplementary guidance covers the following topics...

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The Menlo Report: Ethical Principles Guiding Information and Communication Technology Research (Guidelines | 2011)

Published/Released on September 15, 2011 | Posted by Admin on March 20, 2018 | Keywords: , , , , , , , ,

Executive Summary This report proposes a framework for ethical guidelines for computer and information security research, based on the principles set forth in the 1979 Belmont Report, a seminal guide for ethical research in the biomedical and behavioral sciences. Despite its... More

Executive Summary This report proposes a framework for ethical guidelines for computer and information security research, based on the principles set forth in the 1979 Belmont Report, a seminal guide for ethical research in the biomedical and behavioral sciences. Despite its age, the Belmont Re- port’s insightful abstraction renders it a valuable cornerstone for other domains. We describe how the three principles in the Belmont report can be usefully applied in fields related to research about or involving information and communication technology. ICT research raises new challenges resulting from interactions between humans and communications technologies. In particular, today’s ICT research contexts contend with ubiquitously connected network environments, overlaid with varied, often discordant legal regimes and social norms. We illustrate the application of these principles to information systems security research – a critical infrastructure priority with broad impact and demonstrated potential for widespread harm – although we expect the proposed framework to be relevant to other disciplines, including those targeted by the Belmont report but now operating in more complex and interconnected contexts. [colored_box]We first outline the scope and motivation for this document, including a historical summary of the conceptual framework for traditional human subjects research, and the landscape of ICT research stakeholders. We review four core ethical principles, the three from the Belmont Report (Respect for Persons, Beneficence, and Justice) and an additional principle Respect for Law and Public Interest. We propose standard methods to operationalize these principles in the domain of research involving information and communication technology: identification of stakeholders and informed consent; balancing risks and benefits; fairness and equity; and compliance, transparency and accountability, respectively. We also describe how these principles and applications can be supported through assistive external oversight by ethical review boards, and internal self-evaluation tools such as an Ethical Impact Assessment. . The intent of this report is to help clarify how the characteristics of ICT raise new potential for harm and to show how a reinterpretation of ethical principles and their application can lay the groundwork for ethically defensible research. .

The Menlo Report: Ethical principles guiding information and communication technology research. http://cryptome.org/0006/menlo-report.pdf , September 2011

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A Common Standard for Conflict of Interest Disclosure (Guidance: Center for Science in the Public Interest | 2008)

Published/Released on July 01, 2008 | Posted by Admin on February 18, 2018 | Keywords: , , , , , , ,

Merrill Goozner, Arthur Caplan, Jonathan Moreno, Barnett S. Kramer, Thomas F. Babor, Wendy Cowles Husser

The reporting of conflicts of interest in science and medicine in the scientific literature1 has come under increasing scrutiny in recent years. Failures to disclose conflicts... More

Merrill Goozner, Arthur Caplan, Jonathan Moreno, Barnett S. Kramer, Thomas F. Babor, Wendy Cowles Husser

The reporting of conflicts of interest in science and medicine in the scientific literature1 has come under increasing scrutiny in recent years. Failures to disclose conflicts of interest have become front page news, and a major embarrassment to publishers, editors, and professional societies.2 These failures to disclose relevant relationships have stemmed in part from a lack of uniform definitions for conflicts of interest and confusion about what needs to be reported. Academic investigators operate under varying institutional rules, and many are unable to accurately describe their institutions’ policies.3 Science and biomedical journals have a range of disclosure policies with differences in definitions of conflicts of interest, reporting requirements, and promises to publish.4
In the face of heightened scrutiny, several publishers have moved in the past several years to implement stricter conflict-of-interest disclosure and publication rules. 5 6 7 Organizations are paying greater attention to conflict-of-interest disclosure in the context of redefining the rules of engagement between academic investigators and private industry.8 The need for common standards in defining conflicts of interest has never been greater.

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(University of the South Pacific) HUMAN RESEARCH ETHICS: A Handbook for USP Researchers (Guidance | Updated 2013)

"This Handbook explains the values and principles that guide processes and practices of research involving human participants at the University of the South Pacific.

[colored_box]The ethical values and principles described here apply to all University activities, to all its staff and student researchers including those... More

"This Handbook explains the values and principles that guide processes and practices of research involving human participants at the University of the South Pacific.

[colored_box]The ethical values and principles described here apply to all University activities, to all its staff and student researchers including those visiting for short periods, and to any research agreements or partnerships that the University establishes. . The University’s human ethics will be compliant with the laws of individual University member states, particularly in relation to privacy, confidentiality, ownership, intellectual property requirements, research permit requirements and human rights." . CONTENTS
  1. Introduction
  2. Ethical principles
  3. The University Research Ethics Committee (UREC)
  4. Ethical responsibilities of researchers at the University
  5. Procedures for applying for ethical approval of proposed research

Appendix 1. Screening Questionnaire for Human Ethics (sample)

Appendix 2. Application for Human Ethics Approval (sample)

Appendix 3. Information Sheet (model)

Appendix 4. Participant Consent Form (model)

Appendix 5.Confidentiality Agreement (model)

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Video: Life Sciences Quarterly: The Use of Social Media and Mobile Applications in Clinical Trials & Recent Developments in Research Fraud

Published/Released on December 14, 2017 | Posted by Admin on February 4, 2018 | Keywords: , , , , , , ,

"What are the legal implications of using social media and mobile applications in clinical trials and the recent developments impacting research fraud investigations? [colored_box]In this recap of our fourth quarter presentation, which includes video and an accompanying transcript, panelists – health care partner Mark Barnes and associate David Peloquin – address... More

"What are the legal implications of using social media and mobile applications in clinical trials and the recent developments impacting research fraud investigations? [colored_box]In this recap of our fourth quarter presentation, which includes video and an accompanying transcript, panelists – health care partner Mark Barnes and associate David Peloquin – address such topics as: .

  • Use of social media for research subject recruitment
  • Privacy considerations related to the use of social media and mobile applications
  • Institutional review board and research ethics committee views of social media
  • Obligations of research sponsors to monitor adverse events posted on social media
  • International considerations in use of social media and mobile applications
  • Strategies for conducting research fraud investigations in industry
. This presentation is part of Life Sciences Quarterly, a quarterly seminar series that delivers insights from Ropes & Gray attorneys, speakers from government and industry and other professionals as they examine key developments, issues and trends affecting the life sciences sector." .

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7 Things You Should Know About How Learning Data Impacts Privacy – ELI (Kent Wada, et al | May 2017)

Published/Released on May 12, 2017 | Posted by Admin on January 11, 2018 | Keywords: , , , , , ,

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Opinion 05/2014 on Anonymisation Techniques – ARTICLE 29 DATA PROTECTION WORKING PARTY (2017)

Published/Released on April 10, 2014 | Posted by Admin on November 30, 2017 | Keywords: , , , , , , ,

EXECUTIVE SUMMARY In this Opinion, the WP analyses the effectiveness and limits of existing anonymisation techniques against the EU legal background of data protection and provides recommendations to handle these techniques by taking account of the residual risk of identification inherent in each of them. [colored_box]The WP acknowledges... More

EXECUTIVE SUMMARY In this Opinion, the WP analyses the effectiveness and limits of existing anonymisation techniques against the EU legal background of data protection and provides recommendations to handle these techniques by taking account of the residual risk of identification inherent in each of them. [colored_box]The WP acknowledges the potential value of anonymisation in particular as a strategy to reap the benefits of ‘open data’ for individuals and society at large whilst mitigating the risks for the individuals concerned. However, case studies and research publications have shown how difficult it is to create a truly anonymous dataset whilst retaining as much of the underlying information as required for the task. . In the light of Directive 95/46/EC and other relevant EU legal instruments, anonymisation results from processing personal data in order to irreversibly prevent identification. In doing so, several elements should be taken into account by data controllers, having regard to all the means “likely reasonably” to be used for identification (either by the controller or by any third party). . Anonymisation constitutes a further processing of personal data; as such, it must satisfy the requirement of compatibility by having regard to the legal grounds and circumstances of the further processing. Additionally, anonymized data do fall out of the scope of data protection legislation, but data subjects may still be entitled to protection under other provisions (such as those protecting confidentiality of communications). .

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Global Health Research in an Unequal World: Ethics Case Studies from Africa (Gemma Aellah | 2016)

PREFACE Conducting good, ethical global health research is now more important than ever. Increased global mobility and connectivity mean that in today’s world there is no such thing as ‘local health’. How we experience the effects of disease may be shaped by our particular social and... More

PREFACE Conducting good, ethical global health research is now more important than ever. Increased global mobility and connectivity mean that in today’s world there is no such thing as ‘local health’. How we experience the effects of disease may be shaped by our particular social and political-economic circumstances, but the sick in one part of the world and the healthy in another are connected through economics, politics, media, and imagination, as well as by the infectiousness of disease. Global health research carried out through transnational collaboration is one crucial way in which people from far-flung geographic regions relate to each other. Good global health research, and the relationships it creates, therefore, concerns us all. This book is a collection of fictionalized case studies of everyday ethical dilemmas and challenges often encountered in the process of conducting global health research in Africa where the effects of global, political and economic inequality are particularly evident. Our aim is to create a training tool which can begin to fill the gap between research ethics guidelines and their implementation ‘on the ground’. The case studies, therefore, focus on everyday or ‘relational’ ethics: ethical actions and ideas that emerge through relations with others in context, rather than in universal principles or abstract regulations...

Aellah, G; Chantler, T; Geissler, PW (2016) Global Health Research in an Unequal World: Ethics Case Studies from Africa CABI: Oxfordshire, UK. Available at: https://www.cabi.org/cabebooks/FullTextPDF/2016/20163308509.pdf

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The Ethics Journey in Children’s Research: Checklist

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ICV Guidelines for Muslim Community-University Research Partnerships

Purpose The principles and practices described here are intended to educate, inform and facilitate respectful, collaborative and beneficial research relationships between the Victorian Muslim Community and the wider university research community. It is also a statement of principles to guide these relationships towards an ideal. It... More

Purpose The principles and practices described here are intended to educate, inform and facilitate respectful, collaborative and beneficial research relationships between the Victorian Muslim Community and the wider university research community. It is also a statement of principles to guide these relationships towards an ideal. It is not a formal policy. As the peak community organisation for over 200,000 Muslim Victorians, the ICV has been a ‘community-partner’ or ‘participant’ in many Muslim-focused research projects over its 42-year history...

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Ethics in the scholarship of teaching and learning: Key principles and strategies for ethical practice. Taylor Institute for Teaching and Learning Guide Series

"This new Taylor Institute Guide takes the researcher through the essentials of the Canadian standards for ethical practice in the scholarship of teaching and learning (SoTL). Because of the unique challenges of SoTL, where the human participants that are the subject of the research are also typically the researcher’s... More

"This new Taylor Institute Guide takes the researcher through the essentials of the Canadian standards for ethical practice in the scholarship of teaching and learning (SoTL). Because of the unique challenges of SoTL, where the human participants that are the subject of the research are also typically the researcher’s students, this Guide translates the comprehensive TCPS2 (2014) for the researcher conducting SoTL research." Access this particular guide here.

Fedoruk, L. (2017). Ethics in the scholarship of teaching and learning: Key principles and strategies for ethical practice. Taylor Institute for Teaching and Learning Guide Series. Calgary, AB: Taylor Institute for Teaching and Learning at the University of Calgary. www.ucalgary.ca/taylorinstitute/guides

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Principles and Guidelines for ethical research and evaluation in development – ACFID (Codes and Resource material | July 2017)

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Human research ethics resources Western Sydney University

Published/Released on August 01, 2007 | Posted by Admin on July 20, 2017 | Keywords: , , , , , ,

[colored_box]Useful Resources . "The following documents, some produced by Western Sydney, others by external organisations, may assist researchers to better understand the ethics review environment and the processes at Western Sydney University." . Sections include: .

Ethics administration process Ethics applications External resources .

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[colored_box]Useful Resources . "The following documents, some produced by Western Sydney, others by external organisations, may assist researchers to better understand the ethics review environment and the processes at Western Sydney University." . Sections include: .

Ethics administration process Ethics applications External resources .

Access Western Sydney University's resources page 

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ScottisH Informatics Programme – SHIP

[colored_box]SHIP is an ambitious, Scotland-wide research platform for the collation, management, dissemination and analysis of Electronic Patient Records (EPRs). The programme brings together the Universities of Dundee, Edinburgh, Glasgow and St Andrews with the Information Services Division (ISD) of NHS Scotland. . SHIP is funded by the Wellcome Trust,... More

[colored_box]SHIP is an ambitious, Scotland-wide research platform for the collation, management, dissemination and analysis of Electronic Patient Records (EPRs). The programme brings together the Universities of Dundee, Edinburgh, Glasgow and St Andrews with the Information Services Division (ISD) of NHS Scotland. . SHIP is funded by the Wellcome Trust, the Medical Research Council and the Economic and Social Research Council and aims to: .

  • Provide access to an exciting new national research facility, firmly embedded within and supported by NHS Scotland, providing the basis for numerous future studies using EPRs. .

Read more about SHIP

[embed]http://www.scot-ship.ac.uk/sites/default/files/sant_edit_brian_cox_credit.mp4[/embed] Less

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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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What is Ethics in Research & Why is it Important? (Resources: David B. Resnik | 2015)

When most people think of ethics (or morals), they think of rules for distinguishing between right and wrong, such as the Golden Rule ("Do unto others as you would have them do unto you"), a code of professional conduct like the Hippocratic Oath ("First of all, do no harm"),... More

When most people think of ethics (or morals), they think of rules for distinguishing between right and wrong, such as the Golden Rule ("Do unto others as you would have them do unto you"), a code of professional conduct like the Hippocratic Oath ("First of all, do no harm"), a religious creed like the Ten Commandments ("Thou Shalt not kill..."), or a wise aphorisms like the sayings of Confucius. This is the most common way of defining "ethics": norms for conduct that distinguish between acceptable and unacceptable behavior. Most people learn ethical norms at home, at school, in church, or in other social settings. Although most people acquire their sense of right and wrong during childhood, moral development occurs throughout life and human beings pass through different stages of growth as they mature. Ethical norms are so ubiquitous that one might be tempted to regard them as simple commonsense. On the other hand, if morality were nothing more than commonsense, then why are there so many ethical disputes and issues in our society? One plausible explanation of these disagreements is that all people recognize some common ethical norms but interpret, apply, and balance them in different ways in light of their own values and life experiences. For example, two people could agree that murder is wrong but disagree about the morality of abortion because they have different understandings of what it means to be a human being...

Resnik, D.B. (2015) What is Ethics in Research & Why is it Important? National Institute of Environmental Health Sciences https://www.niehs.nih.gov/research/resources/bioethics/whatis/index.cfm

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Research Ethics Timeline (1932-Present)

Comprehensive (albeit with a US focus) human resea... More

Comprehensive (albeit with a US focus) human research ethics timeline from Tuskegee (1932-72) to the Final Rule for revisions to the Common Rule (2017).

Resnik, D.B. (2017): Research Ethics Timeline (1932-Present). National Institute of Environmental Health Sciences https://www.niehs.nih.gov/research/resources/bioethics/timeline/index.cfm

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Predictive Analytics in Higher Education: Five Guiding Practices for Ethical Use (Resources | March 2017)

Five Guiding Practices for Ethical Use

Contents ....Introduction ....Guiding Practice 1: Have a Vision and Plan ....Guiding Practice 2: Build a Supportive Infrastructure ....Guiding Practice 3: Work to Ensure Proper Use of Data ....Guiding Practice... More

Five Guiding Practices for Ethical Use

Contents ....Introduction ....Guiding Practice 1: Have a Vision and Plan ....Guiding Practice 2: Build a Supportive Infrastructure ....Guiding Practice 3: Work to Ensure Proper Use of Data ....Guiding Practice 4: Design Predictive Analytics Models and Algorithms that Avoid Bias ....Guiding Practice 5: Meet Institutional Goals and Improve Student Outcomes by Intervening with Care Introduction Colleges are under increasing pressure to retain their students. Federal and state officials are demanding that those who enter their public institutions— especially students from underrepresented groups— earn a degree. Over two dozen states disburse some state funding on how many students an institution graduates, rather than how many it enrolls. Students and families are more anxious than ever before about crossing the degree finish line, as the financial burden of paying for college has increased significantly in recent years. And retaining students is becoming more crucial to the university bottom line. As recruiting and educating students becomes increasingly expensive, colleges hope to balance the resources they use to recruit students with revenue generated when those students are retained. Because of these pressures, institutions have begun analyzing demographic and performance data to predict whether a student will enroll at an institution, stay on track in her courses, or require support so that she does not fall behind. Using data in this way is known as predictive analytics. Analyzing past student data to predict what current and prospective students might do has helped institutions meet their annual enrollment and revenue goals with more targeted recruiting and more strategic use of institutional aid. Predictive analytics has also allowed colleges to better tailor their advising services and personalize learning in order to improve student outcomes...

Manuela Ekowo and Iris Palmer (2017) Predictive Analytics in Higher Education: Five Guiding Practices for Ethical Use. New America. https://www.newamerica.org/education-policy/policy-papers/predictive-analytics-higher-education/

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TRUST – Protecting San Indigenous Knowledge – From A Research Contract to a San Code of Ethics

[embed]https://www.youtube.com/watch?v=HOdw3mv7JSo[/embed] About [colored_box]The Bushmen/San of South Africa are one of the most researched communities in the world. They hold valuable traditional knowledge and their genetic traits are of great interest to researchers. To protect themselves from exploitation, they took the initiative and developed a media contract and... More

[embed]https://www.youtube.com/watch?v=HOdw3mv7JSo[/embed] About [colored_box]The Bushmen/San of South Africa are one of the most researched communities in the world. They hold valuable traditional knowledge and their genetic traits are of great interest to researchers. To protect themselves from exploitation, they took the initiative and developed a media contract and a research contract in 2003. When film makers or researchers engage with the community, they are meant to go through the community structures (e.g. the San Council) to get approval for their activities. To protect themselves further, the San are currently in the process of developing a Code of Ethics for Researchers, supported by the TRUST project. This film captures the views of some leading San representatives on their efforts to protect the community from exploitation. Less

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Te Ara Tika. Guidelines for Māori research ethics: A framework for researchers and ethics committee members (Guidance and Resource Material | 2010)

Introduction This document outlines a framework for addressing Māori ethical issues within the context of decision-making by ethics committee members. It draws on a foundation of tikanga Māori (Māori protocols and practices) and will be useful for researchers, ethics committee members and those who engage in consultation or advice about Māori ethical issues from a local, regional, national or international perspective. Context Research contributes to the broader development objectives of society. Ethics has a specific role in guiding key behaviours, processes and methodologies used in research. International codes of ethics such as the Nuremburg Code (1947)2, the Helsinki Declaration (1964)3, the Belmont Report (1979)4 and, more recently, the UNESCO Universal Declaration on Bioethics and Human Rights (2005)5 shape the changing ethical standards and professional expectations for researchers. These codes have often been developed in response to examples of research that resulted in adverse outcomes and/or experiences for participants and... More

Introduction This document outlines a framework for addressing Māori ethical issues within the context of decision-making by ethics committee members. It draws on a foundation of tikanga Māori (Māori protocols and practices) and will be useful for researchers, ethics committee members and those who engage in consultation or advice about Māori ethical issues from a local, regional, national or international perspective. Context Research contributes to the broader development objectives of society. Ethics has a specific role in guiding key behaviours, processes and methodologies used in research. International codes of ethics such as the Nuremburg Code (1947)2, the Helsinki Declaration (1964)3, the Belmont Report (1979)4 and, more recently, the UNESCO Universal Declaration on Bioethics and Human Rights (2005)5 shape the changing ethical standards and professional expectations for researchers. These codes have often been developed in response to examples of research that resulted in adverse outcomes and/or experiences for participants and their communities. Despite formal processes and codes of ethics there is ongoing evidence of unethical research practice which highlights the importance of the researcher’s own credibility, trust, honesty and integrity vis-à-vis6 the research project and participants. Table of Contents Introduction Context Tikanga Purpose Background to the guidelines and the framework Whakapapa – He aha te whakapapa o tēnei kaupapa? Tika – Me pehea e tika ai tēnei kaupapa? Manaakitanga – Mā wai e manaaki tēnei kaupapa? Mana – Kei a wai te mana mō tēnei kaupapa? Implementation Glossary of Māori terms Appendix A: Timeline of developments in Māori research ethics Appendix B: Māori Ethical Frameworks Appendix C: Characteristics of Māori research

Hudson M, Milne M, Reynolds P, Russell K and Smith B (2010) Te Ara Tika. Guidelines for Māori research ethics: A framework for researchers and ethics committee members. Final Draft. Available at: http://www.hrc.govt.nz/sites/default/files/Te%20Ara%20Tika%20Guidelines%20for%20Maori%20Research%20Ethics.pdf

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Research Ethics: A Source Guide to Conducting Research with Indigenous Peoples (Indigenous Geography 2016)

"This free, online resource attempts to keep abreast of scholarship, protocols, and other documents relating to the conduct of research in Indigenous settings. A great deal of literature and guidelines have emerged regarding appropriate methods and practices for conducting research with Indigenous Peoples. This page intends to keep abreast of... More

"This free, online resource attempts to keep abreast of scholarship, protocols, and other documents relating to the conduct of research in Indigenous settings. A great deal of literature and guidelines have emerged regarding appropriate methods and practices for conducting research with Indigenous Peoples. This page intends to keep abreast of these publications and statements. While this list is organized regionally, all sources have contributions to the overall discussion If you are aware of sources not listed here, or find broken links, please contact the webmaster.

World/General United States Canada Australia New Zealand Pacific Islands"

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Whiteboard video by UWA students – human research ethics and social research

Each year, Assoc. Prof. Farida Fozdar (who works with AHRECS’ Prof. Mark Israel) runs an intensive postgraduate unit on Social Research Ethics. Social Research Ethics is designed for recent graduates from any degree and major who want to pursue a career in, or simply develop... More

Each year, Assoc. Prof. Farida Fozdar (who works with AHRECS’ Prof. Mark Israel) runs an intensive postgraduate unit on Social Research Ethics. Social Research Ethics is designed for recent graduates from any degree and major who want to pursue a career in, or simply develop their skills in, social research, postgraduates embarking on doctoral studies involving social research, or graduates already in the workforce that wish to gain further knowledge to advance their career opportunities related to social research methods. This year, students from Indonesia, Singapore, Ghana, Denmark, the United Kingdom and Australia took the unit in Perth. The unit can be taken on its own or as part of the Master of Social Research Methods at the University of Western Australia, which delivers highly transferable and much sought after social research skills with a ‘hands on’ approach, giving students the skills to find and generate information on pressing social questions. It also provides the skills needed to prepare and present research findings in ways that have an impact. If you are interested in enrolling in either the unit or the Masters, please contact Farida at farida.fozdar@uwa.edu.au. As part of the assessment for Social Research Ethics, students produce a short video explaining a key concept to future generations of students. From time to time, we’ll post some of the work completed by students in the unit on the AHRECS site. This first video that we feature was created by Joanne Collins and Tamara Sindhunakorn. It explores the issues of informed consent and confidentiality in qualitative and online research. The students cram a lot of information into three minutes. Having recently produced our own whiteboard video on resourcing reflective practice, we know how difficult it can be to do so while representing diversity and allowing an occasional flash of humour. Respect. Gary and Mark

[embed]https://ahrecs.com/wp-content/uploads/2016/10/tam-jo-big-final.mp4[/embed]

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The Ethics of Social Research with Children and Families in Young Lives: Practical Experiences (2009)

Preview: A great deal of attention is now paid to the ethics of social research. Research governance has expanded, and a burgeoning literature is emerging that describes the processes, practices and questions that arise in social research with children, families and communities. This paper outlines the approach taken to research... More

Preview: A great deal of attention is now paid to the ethics of social research. Research governance has expanded, and a burgeoning literature is emerging that describes the processes, practices and questions that arise in social research with children, families and communities. This paper outlines the approach taken to research ethics within Young Lives, a long-term study of childhood poverty in four developing countries. It describes some of the practical difficulties that Young Lives faces, and emphasises the importance of understanding local contexts in undertaking research with children and families in environments that are dynamic and may change rapidly from one year to the next, economically, environmentally and politically. The paper aims to contribute to current debates about research practices, the ethics of longitudinal research with children and research with communities in majority world contexts, in the spirit of shared enquiry and learning.

Morrow, V (2009) The Ethics of Social Research with Children and Families in Young Lives: Practical Experiences. http://www.younglives.org.uk/content/ethics-social-research-children-and-families-young-lives-practical-experiences

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An Ethical Framework for the development and review of health research proposals involving humanitarian contexts, Enhanced Learning and Research for Humanitarian Action, Project Final Report

"The authors propose an ethical framework to 1) guide development of research designs and protocols intended for implementation in humanitarian crises and complex emergency contexts to help ensure their ethical viability, and 2) support ethical review of such protocols by independent ethical review bodies (REBs, IRBs), funders, and other... More

"The authors propose an ethical framework to 1) guide development of research designs and protocols intended for implementation in humanitarian crises and complex emergency contexts to help ensure their ethical viability, and 2) support ethical review of such protocols by independent ethical review bodies (REBs, IRBs), funders, and other organizations of interest, and 3) serve general educational purposes and enhance public understanding of the issues involved in and ethical principles guiding research in such settings. The framework is designed as a tool – offering a practical and easily implementable approach in which key ethical principles are considered in a clustered, hierarchical order. Implementation and assessment of the utility of this approach by researchers and by REBs/IRBs considering research protocols involving humanitarian crisis setting will guide further refinement of this ethical framework." Keywords: Evidence, Health, Principles & ethics, Research methodology Agency: DFID - Department for International Development (UK), ELRHA - Enhancing Learning and Research for Humanitarian Assistance

Curry D, Waldman R & Caplan A (2014) An Ethical Framework for the development and review of health research proposals involving humanitarian contexts, Enhanced Learning and Research for Humanitarian Action, Project Final Report. http://www.alnap.org/resource/10687

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Médecins Sans Frontières – Research Ethics Framework: Guidance Document

Introduction "Médecins Sans Frontières (MSF) is one of the leading humanitarian medical organizations. The foundational and animating values of MSF as a humanitarian medical organization are rooted in ethics. It has a well-deserved reputation for its work in responding to humanitarian needs created by a variety of health emergencies around the world. It... More

Introduction "Médecins Sans Frontières (MSF) is one of the leading humanitarian medical organizations. The foundational and animating values of MSF as a humanitarian medical organization are rooted in ethics. It has a well-deserved reputation for its work in responding to humanitarian needs created by a variety of health emergencies around the world. It is respected as an organization for its leadership and moral authority in humanitarian affairs. "Historically, research was not seen as core to the mission of MSF. However, it now initiates, sponsors or participates in numerous research projects in multiple field sites. The results of MSF research have had substantial impact on global health policy and provided benefits to populations served by MSF and elsewhere. MSF has also shown leadership in operational research initiatives in the humanitarian NGO sector. As a result, research has become increasingly integral to MSF activities, both in the field and in global health advocacy. "MSF has paid particular attention to ethical issues related to the research in which they engage. This is manifested by the creation of an independent ethics review board (ERB) that evaluates all research proposals involving MSF. This board chose to use an explicit framework to assess the ethical dimensions of the research1. Since its adoption in 2003, the research ethics framework has served well, as it has brought greater clarity to the expectations of both the ERB and MSF staff engaged in research. The quality of the proposals submitted to the board has improved considerably over the past decade..."

Médecins Sans Frontières (MSF) (2013) Research Ethics Framework: Guidance Document. MSF. http://fieldresearch.msf.org/msf/handle/10144/305288

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Chronic Poverty Research Centre Methods Toolbox (Resources)

"Despite the growing consensus that poverty is multi-dimensional and complex, a lot of research is based on using approaches and methods that cannot capture a full picture. To deepen the understanding of poverty, much research needs to be multi-disciplinary and involve a mix of quantitative, qualitative and participatory approaches. This... More

"Despite the growing consensus that poverty is multi-dimensional and complex, a lot of research is based on using approaches and methods that cannot capture a full picture. To deepen the understanding of poverty, much research needs to be multi-disciplinary and involve a mix of quantitative, qualitative and participatory approaches. This toolbox provides a guide to the variety of approaches and methods available and how they can be mixed to produce both rigorous and policy relevant research. Through identifying further resources (and especially websites) where you can explore methodological tools and issues in greater detail, the toolbox allows researchers to check that their research designs reflect ‘good practice’. The CPRC Methods toolbox is available to download in full, or by sections below. The document contains links that can be accessed by viewing the Toolbox online."

Chronic Poverty Research Centre (2001) Chronic Poverty Research Centre Methods Toolbox. http://www.chronicpoverty.org/page/toolbox

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Scholarship of Teaching and Learning Human Research Ethics Resource Manual (SoTL Manual)

In 2014 the Commonwealth Office of Learning and Teaching (OLT) commissioned AHRECS to undertake work to help OLT grant-holders and fellows avoid unnecessary difficulties and delays during research ethics review. We identified several contributing factors to these problems including:
  1. the inexperience of some Scholarship of Teaching and Learning researchers in approaching human research and human research ethics review;
  2. the unfamiliarity of some research ethics reviewers with standard practices in the Scholarship of Teaching and Learning; and
  3. the absence of resources relating to the ethical design and review of Scholarship of Teaching and Learning research.
The OLT contracted AHRECS to produce a resource manual to support the ethical decision making of the researchers that it funded. It also wanted to assist other SoTL researchers and research ethics reviewers with the ethical review of SoTL research. The AHRECS SoTL Manual is comprised of six complementary booklets that include academic references,... More

In 2014 the Commonwealth Office of Learning and Teaching (OLT) commissioned AHRECS to undertake work to help OLT grant-holders and fellows avoid unnecessary difficulties and delays during research ethics review. We identified several contributing factors to these problems including:
  1. the inexperience of some Scholarship of Teaching and Learning researchers in approaching human research and human research ethics review;
  2. the unfamiliarity of some research ethics reviewers with standard practices in the Scholarship of Teaching and Learning; and
  3. the absence of resources relating to the ethical design and review of Scholarship of Teaching and Learning research.
The OLT contracted AHRECS to produce a resource manual to support the ethical decision making of the researchers that it funded. It also wanted to assist other SoTL researchers and research ethics reviewers with the ethical review of SoTL research. The AHRECS SoTL Manual is comprised of six complementary booklets that include academic references, recommended reading and prompts for ethical reflections. The booklets are practically focused and include example problems/suggested strategies. The Manual is available from the OLT web site, and a copy is hosted on the AHRECS site below.

Booklet 01 SoTL Manual: Research ethics and the Scholarship of Teaching and Learning

Booklet 02 SoTL Manual: Ethics review and grant or fellowship funded research

Booklet 03 SoTL Manual: Risks and benefits in SoTL research

Booklet 04 SoTL Manual: Recruitment and consent in SoTL research

Booklet 05 SoTL Manual: Privacy and confidentiality in SoTL funded research

Booklet 06 SoTL Manual: Ethical challenges and practical strategies

The SoTL Manual applies, references and complements the University Research Ethics Manual commercialised by Griffith University. It is however possible to use the SoTL Manual without purchasing a UREM license. The six booklets of the SoTL Manual are provided here as *.docx on an open license basis for use by researchers, research ethics reviewers, research office staff, and institutions.  If you want to use more than one paragraph of text from the SoTL Manual (e.g. as the basis of a new resource), we ask you to cite the SoTL Manual as a source including the fact that the SoTL Manual was commissioned by the OLT and produced by AHRECS. Allen, G, Israel, M and Thomson, C (2016) Scholarship of Teaching and Learning Human Research Ethics Resource Manual. Sydney: Australian Government Office for Learning and Teaching. https://ahrecs.com/?post_type=resource&p=1696 Please direct any questions about the SoTL Manual or the UREM to Dr Gary Allen (gary@ahrecs.com). You can find out more about the work of AHRECS at www.ahrecs.com. Please note that we have found that sometimes links from Word documents to our web site can return an error. This is an intermittent bug, all six booklets are on the AHRECS site, and the links are correct.
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Scholarship of Teaching and Learning Human Research Ethics Resource Manual (SoTL Manual)

 

AHRECS2

In 2014 the Commonwealth Office of Learning and Teaching (OLT) commissioned AHRECS to undertake work to help OLT grant-holders and fellows avoid unnecessary difficulties and delays during research ethics review. We identified several contributing factors to these problems including:
  1. the inexperience of some Scholarship of Teaching and Learning researchers in approaching human research and human research ethics review;
  2. the unfamiliarity of some research ethics reviewers with standard practices in the Scholarship of Teaching and Learning; and
  3. the absence of resources relating to the ethical design and review of Scholarship of Teaching and Learning research.
The OLT contracted AHRECS to produce a resource manual to support the ethical decision making of the researchers that it funded. It also wanted to assist other SoTL researchers and research ethics reviewers with the ethical review of SoTL research. The AHRECS SoTL Manual is comprised of six... More

 

AHRECS2

In 2014 the Commonwealth Office of Learning and Teaching (OLT) commissioned AHRECS to undertake work to help OLT grant-holders and fellows avoid unnecessary difficulties and delays during research ethics review. We identified several contributing factors to these problems including:
  1. the inexperience of some Scholarship of Teaching and Learning researchers in approaching human research and human research ethics review;
  2. the unfamiliarity of some research ethics reviewers with standard practices in the Scholarship of Teaching and Learning; and
  3. the absence of resources relating to the ethical design and review of Scholarship of Teaching and Learning research.
The OLT contracted AHRECS to produce a resource manual to support the ethical decision making of the researchers that it funded. It also wanted to assist other SoTL researchers and research ethics reviewers with the ethical review of SoTL research. The AHRECS SoTL Manual is comprised of six complementary booklets that include academic references, recommended reading and prompts for ethical reflections. The booklets are practically focused and include example problems/suggested strategies. The Manual is available from the OLT web site, and a copy is hosted on the AHRECS site below.

Booklet 01 SoTL Manual: Research ethics and the Scholarship of Teaching and Learning

Booklet 02 SoTL Manual: Ethics review and grant or fellowship funded research

Booklet 03 SoTL Manual: Risks and benefits in SoTL research

Booklet 04 SoTL Manual: Recruitment and consent in SoTL research

Booklet 05 SoTL Manual: Privacy and confidentiality in SoTL funded research

Booklet 06 SoTL Manual: Ethical challenges and practical strategies

The SoTL Manual applies, references and complements the University Research Ethics Manual commercialised by Griffith University. It is however possible to use the SoTL Manual without purchasing a UREM license. The six booklets of the SoTL Manual are provided here as *.docx on an open license basis for use by researchers, research ethics reviewers, research office staff, and institutions.  If you want to use more than one paragraph of text from the SoTL Manual (e.g. as the basis of a new resource), we ask you to cite the SoTL Manual as a source including the fact that the SoTL Manual was commissioned by the OLT and produced by AHRECS.

Allen, G, Israel, M and Thomson, C (2016) Scholarship of Teaching and Learning Human Research Ethics Resource Manual. Sydney: Australian Government Office for Learning and Teaching. https://ahrecs.com/?post_type=resource&p=1696

Please direct any questions about the SoTL Manual or the UREM to Dr Gary Allen (gary@ahrecs.com). You can find out more about the work of AHRECS at www.ahrecs.com. Please note that we have found that sometimes links from Word documents to our web site can return an error. This is an intermittent bug, all six booklets are on the AHRECS site, and the links are correct. Less

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Perspectives on Big Data, Ethics, and Society – White Paper (Resource material: Council for Big Data, Ethics, and Society 2016)

"The Council for Big Data, Ethics, and Society has released a comprehensive white paper consolidating conversations and ideas from two years of meetings and discussions: Perspectives on Big Data, Ethics, and Society Today’s release marks a major milestone for the Council, which began in 2014 with support from the National Science Foundation and the goal of providing critical social and cultural perspectives on “big data” research initiatives. The work of the Council consistently surfaced conflicts between big data research methods and existing norms. Should big data methods be exempted from those norms? pushed into them? Are entirely new paradigms needed? The white paper provides recommendations in the areas of policy, pedagogy, and network building, as well as identifying crucial areas for further research. From the Executive Summary: The Council’s findings, outputs, and recommendations—including those described in this white paper as well as those in earlier reports—address concrete manifestations of these... More

"The Council for Big Data, Ethics, and Society has released a comprehensive white paper consolidating conversations and ideas from two years of meetings and discussions: Perspectives on Big Data, Ethics, and Society Today’s release marks a major milestone for the Council, which began in 2014 with support from the National Science Foundation and the goal of providing critical social and cultural perspectives on “big data” research initiatives. The work of the Council consistently surfaced conflicts between big data research methods and existing norms. Should big data methods be exempted from those norms? pushed into them? Are entirely new paradigms needed? The white paper provides recommendations in the areas of policy, pedagogy, and network building, as well as identifying crucial areas for further research. From the Executive Summary: The Council’s findings, outputs, and recommendations—including those described in this white paper as well as those in earlier reports—address concrete manifestations of these disjunctions between big data research methods and existing research ethics paradigms. We have identified policy changes that would encourage greater engagement and reflection on ethics topics. We have indicated a number of pedagogical needs for data science instructors, and endeavored to fulfill some of them. We have also explored cultural and institutional barriers to collaboration between ethicists, social scientists, and data scientists in academia and industry around ethics challenges. Overall, our recommendations are geared toward those who are invested in a future for data science, big data analytics, and artificial intelligence guided by ethical considerations along with technical merit. In addition to the Perspectives on Big Data, Ethics, and Society white paper, the Council’s website provides access to research literature, case studies,* meeting minutes, membership, and output such as a Letter on Proposed Changes to the Common Rule. Feedback is welcome at bdes at data society dot net." Less

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National Centre for Indigenous Genomics

[colored_box]"The National Centre for Indigenous Genomics (NCIG) aims to create a repository of Indigenous biospecimens, genomic data and documents for research and other uses that benefit Indigenous donors, their communities and descendants, the broader Indigenous community and the general Australian community. . "About NCIG: an introduction for donor communities - This is... More

[colored_box]"The National Centre for Indigenous Genomics (NCIG) aims to create a repository of Indigenous biospecimens, genomic data and documents for research and other uses that benefit Indigenous donors, their communities and descendants, the broader Indigenous community and the general Australian community. . "About NCIG: an introduction for donor communities - This is the first of several animations NCIG is developing to assist consultation and engagement between the Centre and donor communities. This introductory film explains the origins of the NCIG collection, and its potential in the context of modern scientific and medical research. . "This animation was collaboratively developed by representatives of NCIG’s Research Advisory Committee, with valuable input from the team at the Machado Joseph Disease Foundation and Browndog Productions. It was funded by The Canberra Medical Society."

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Ethics assessment in different fields: Social sciences (SATORI Deliverable 1.1)

Excerpt: This report on ethical assessment of research and innovation in social sciences is a part of a comparative study across scientific fields and disciplines within a wider analysis of EU and international practices of ethical assessment, made by the SATORI project. Ethical assessment in this analysis covers any kind of review or evaluation of research and innovation based on ethical principles. The report will focus on academic traditions of ethics assessment in the field, various types of (national and international) organisations involved in assessment and relevant legislation. Social sciences are a group of academic disciplines that take human society as the object of their study, attempting to understand human behaviour, relationships and institutions within society. Traditionally, the group includes sociology, psychology, anthropology, economics, law and political science, although there is no outright consensus on which disciplines should be included. A large number of subfields have and keep emerging, including human geography, cultural studies, business studies, communication studies, development studies, criminology, etc. A wide... More

Excerpt: This report on ethical assessment of research and innovation in social sciences is a part of a comparative study across scientific fields and disciplines within a wider analysis of EU and international practices of ethical assessment, made by the SATORI project. Ethical assessment in this analysis covers any kind of review or evaluation of research and innovation based on ethical principles. The report will focus on academic traditions of ethics assessment in the field, various types of (national and international) organisations involved in assessment and relevant legislation. Social sciences are a group of academic disciplines that take human society as the object of their study, attempting to understand human behaviour, relationships and institutions within society. Traditionally, the group includes sociology, psychology, anthropology, economics, law and political science, although there is no outright consensus on which disciplines should be included. A large number of subfields have and keep emerging, including human geography, cultural studies, business studies, communication studies, development studies, criminology, etc. A wide range of ethical issues is discussed in the social sciences. Informed consent, confidentiality, avoiding harm, doing good, relations to peers and research integrity are all part of standard ethical guidelines in many of its disciplines. Even though this list may seem similar to issues in other scientific fields, especially in biomedicine, it is important to acknowledge that the nature and methodologies of social science research imply different kinds of ethical risks, especially concerning research participants. Potential for harm resides less in health and injury risks and rather in psychological distress and the danger of stigmatisation if sensitive private information is disclosed. Social scientists often emphasise the need to reflect the proper nature of these risks in ethical assessment protocols.

Gurzawska, A., & R. Benčin, “Ethics assessment in different fields: Social sciences”, Annex 2.d, Ethical Assessment of Research and Innovation: A Comparative Analysis of Practices and Institutions in the EU and selected other countries, SATORI Deliverable 1.1, June 2015. http://satoriproject.eu/media/2.d-Social-Sciences.pdf

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Stakeholders Acting Together On the ­ethical impact assessment of ­Research and Innovation (SATORI 2015)

"SATORI aims to develop a common European framework for ethical assessment of research and innovation SATORI is a platform for the consolidation and advancement of ethical assessment in research and innovation. The 4-year project aims to develop a common framework of ethical principles and practical approaches so as to strengthen... More

"SATORI aims to develop a common European framework for ethical assessment of research and innovation SATORI is a platform for the consolidation and advancement of ethical assessment in research and innovation. The 4-year project aims to develop a common framework of ethical principles and practical approaches so as to strengthen shared understandings among actors involved in the design and implementation of research ethics. To achieve this aim, the project will gather private and public stakeholders from Europe and beyond in an intensive 4-year process of research and dialogue. Ultimately, the project seeks to establish a permanent platform around the framework to secure ongoing learning and attunement among stakeholders in ethical assessment."

Click here to go to the SATORI web site

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Internet research ethics (Norwegian National Committees for Research Ethics 2015)

"This anthology addresses ethical challenges that arise within the field of Internet research. Among the issues discussed in the book are the following:

* When is voluntary consent from research subjects required in using the Internet as a data source?

* How many researchers secure the privacy of research subjects in a landscape where the traditions public/private distinction is blurred and re-identification is a recurring threat?

* What are the central ethical and legal aspects of Internet research for individuals, groups, and society?

* Internet Research Ethics will be the first book to be published open access by a norwegian academic publisher (Cappelen Damm Akademisk).

Articles:

Consent and information – ethical considerations when conducting research on social media Dag Elgesem

Possibilities and limitations of Internet research: A legal framework Katrine Utaaker Segadal

New selves, new research ethics? Charles Ess

Researching social media: Confidentiality, anonymity and... More

"This anthology addresses ethical challenges that arise within the field of Internet research. Among the issues discussed in the book are the following:

* When is voluntary consent from research subjects required in using the Internet as a data source?

* How many researchers secure the privacy of research subjects in a landscape where the traditions public/private distinction is blurred and re-identification is a recurring threat?

* What are the central ethical and legal aspects of Internet research for individuals, groups, and society?

* Internet Research Ethics will be the first book to be published open access by a norwegian academic publisher (Cappelen Damm Akademisk).

Articles:

Consent and information – ethical considerations when conducting research on social media Dag Elgesem

Possibilities and limitations of Internet research: A legal framework Katrine Utaaker Segadal

New selves, new research ethics? Charles Ess

Researching social media: Confidentiality, anonymity and reconstructing online practices Marika Lüders

Counting children. On research methodology, ethics and policy development Elisabeth Staksrud

Social research and Big Data – the tension between opportunities and realities Kari Steen-Johnsen and Bernard Enjolras

Studying Big Data – ethical and methodological considerations Anders Olof Larsson

Big Data – big trouble? Meanderings in an uncharted ethical landscape Robindra Prabhu"

This open access publication can be accessed for free from: https://www.etikkom.no/en/news/news-archive/2015/new-anthology-internet-research-ethics/ Less

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European textbook on ethics in research

"This textbook is the output of the project "Europ... More

"This textbook is the output of the project "European Textbook on Ethics in Research", funded by the European Commission and delivered by members of the Centre for Professional Ethics at Keele University. It is designed for use in the training of science students, researchers and research ethics committee members throughout Europe and beyond. It is intended to be accessible to scientific and lay readers, including those with no previous experience of ethical theory and analysis. The scope of the textbook is the ethics of scientific research involving human beings. It contains case studies relating to a variety of scientific disciplines, including biomedical and human life sciences, new technologies and the social sciences. These have been chosen to illustrate and facilitate discussion of key ethical issues, and to give a flavour of the range of research settings in which these issues occur. Readers will be introduced to a range of philosophical perspectives and concepts, but without any particular approach being promoted. Similarly, reference will be made to major religious views where relevant, but without endorsing or rejecting any particular view." Hughes, J., Hunter, D., Sheehan, M., Wilkinson, S., & Wrigley, A. (2010) European textbook on ethics in research. Publications Office of the European Union, Luxembourg. Available from: https://ec.europa.eu/research/science-society/document_library/pdf_06/textbook-on-ethics-report_en.pdf Less

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Demystifying ethical review (CFCA Resource Sheet – February 2013)

"This paper aims to provide an overview of the process of ethical review and how it may apply to those outside of a "research organisation" who wish to conduct research or evaluate their own programs. Conducting research that meets high ethical standards is a priority for most researchers. Ethical review... More

"This paper aims to provide an overview of the process of ethical review and how it may apply to those outside of a "research organisation" who wish to conduct research or evaluate their own programs. Conducting research that meets high ethical standards is a priority for most researchers. Ethical review processes have been established to safeguard both those who participate in research and the individuals and organisations who conduct human research from unethical conduct. While horror stories of unethical and cruel research exist, thankfully, they are rare. The process of ethical review can seem mysterious and difficult at first. However, it is often not as difficult as imagined. As will be outlined in this paper, some research and evaluation projects can be approved with expedited reviews, and others, such as those that solely utilise previously collected data (e.g., pre- and post-program participant surveys) and so pose no risk of harm to participants often do not require formal ethical approval at all. This paper was compiled by Deborah Scott, Research Fellow with the Child Family Community Australia information exchange at the Australian Institute of Family Studies." The resource sheet is available on the CFCA web site. Less

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Research Ethics in Ethnography/Anthropology (Dr Ron Iphofen AcSS)

"This Report was prepared for the Ethics Unit B6, DG Research and Innovation of the European Commission (EC). The primary audience for this Report are ethics review committees or panels who might not be so directly familiar with the methods regularly adopted by ethnographers and anthropologists. There is nothing new here for practitioners of those disciplines, but it is hoped anyone with an interest in ethics review in ethnography/anthropology may also find the information contained here useful. Although there are some fundamental core ethical principles that can be applied to all human subjects research, the operationalisation of those principles varies according to the methodology adopted. A wide variety of research methods can be found within the social sciences and humanities (SSH) – for this reason the contribution that can be made to advancing human knowledge and scientific understanding from the SSH disciplines may be obstructed or undermined if inappropriate review criteria are applied to research proposals. Ethical review should be informed by... More

"This Report was prepared for the Ethics Unit B6, DG Research and Innovation of the European Commission (EC). The primary audience for this Report are ethics review committees or panels who might not be so directly familiar with the methods regularly adopted by ethnographers and anthropologists. There is nothing new here for practitioners of those disciplines, but it is hoped anyone with an interest in ethics review in ethnography/anthropology may also find the information contained here useful. Although there are some fundamental core ethical principles that can be applied to all human subjects research, the operationalisation of those principles varies according to the methodology adopted. A wide variety of research methods can be found within the social sciences and humanities (SSH) – for this reason the contribution that can be made to advancing human knowledge and scientific understanding from the SSH disciplines may be obstructed or undermined if inappropriate review criteria are applied to research proposals. Ethical review should be informed by the underlying theoretical and methodological assumptions of the discipline which frames the research proposal. This requires the provision of a full justification of the research approach from the research proposer, together with a properly constituted and competent review panel and a robust, fair and transparent review process. "Section 1 in this paper deals with basic theoretical assumptions and methodology. Sections 2 and 3 establish the ethical principles by which all scientific research should be assessed. In section 4 those general ethical principles are applied to the ‘special consideration’ that needs to be given to given to ethnographic and anthropological research, given the nature of its theoretical assumptions and primary research methods. This paper draws on previously published material – Iphofen (2011), Iphofen, Krayer and Robinson (2009). I am grateful for the comments made by a range of experts to improve upon the first draft of this Report and particularly wish to acknowledge the constructive contributions to this final version made by Prof. Robert Dingwall" PDF copy of the report Less

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Global Bioethics Blog

"This is the English language blog of a collaborat... More

"This is the English language blog of a collaborative bioethics project entitled 'Strengthening bioethics capacity and justice in health' funded by the Fogarty International Center The project aims to promote research ethics and bioethics in Democratic Republic of Congo and Francophone Africa" You can access blog at: http://globalbioethics.blogspot.com.au/ Less

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AHRECS Summary Report and Recommendations to the OLT

In 2014 AHRECS was engaged by the Australian Government Office for Learning and Teaching (OLT) to produce a report with regard to the fact an unsatisfactory number of grant and fellowship recipients had reported delays and problems with the progress of their work because of ethical review difficulties. The 47... More

In 2014 AHRECS was engaged by the Australian Government Office for Learning and Teaching (OLT) to produce a report with regard to the fact an unsatisfactory number of grant and fellowship recipients had reported delays and problems with the progress of their work because of ethical review difficulties. The 47 page internal report suggested that there were a number of contributing factors to this situation and recommended a number of strategies to address these issues. AHRECS produced a public summary of the report which has been posted on the OLT web site and has been included in the AHRECS Resources Library. AHRECS is currently working on six ressources booklets about key ethics issues for scholarship of learning and teaching research - a copy of which will also appear in the library. This resource may be cited as: Australasian Human Research Ethics Consultancy Services, (2015). AHRECS Summary Report and Recommendations to the OLT - Australasian Human Research Ethics Consultancy Services. [online] Available at: https://ahrecs.com/resources/ahrecs-summary-report-and-recommendations-to-the-olt [Accessed 8 Jul. 2015]. Less

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The Ethics Application Repository

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TEAR is an open-access, online repository of exemplary ethics applications using open source software (D-Space). It's available to anyone to use – novice researchers, researchers exploring new methodologies and IRB members wanting to do the same. As it grows, we expect that researchers exploring ethical practice will also find it interesting as a source information. The founders of TEAR believe that by sharing exemplary ethics applications, knowledge sharing occurs. This is something readily acknowledged and supported within disciplines generally, but overlooked when considering ethical practice specifically, as part of a researchers expertise and skills.  TEAR sets out from the premise that there is value in reading well put together applications of others and being able to see examples of safe and good ethical practice in a variety of situations.  Current entries in the archive cover a range of research settings... More

path

TEAR is an open-access, online repository of exemplary ethics applications using open source software (D-Space). It's available to anyone to use – novice researchers, researchers exploring new methodologies and IRB members wanting to do the same. As it grows, we expect that researchers exploring ethical practice will also find it interesting as a source information. The founders of TEAR believe that by sharing exemplary ethics applications, knowledge sharing occurs. This is something readily acknowledged and supported within disciplines generally, but overlooked when considering ethical practice specifically, as part of a researchers expertise and skills.  TEAR sets out from the premise that there is value in reading well put together applications of others and being able to see examples of safe and good ethical practice in a variety of situations.  Current entries in the archive cover a range of research settings from those with challenging contexts (such as illegal or unsafe behavior) to those with tricky relationships (within family auto-ethnographies). By providing these examples, researchers are able to explore how others have addressed various issues within their research and consider how to apply them to their own setting.  TEAR is a relatively new initiative and as such has relatively small number of collections and items, but this collection packs some outstanding examples of ethical thinking for Photovoice projects, educational research, research with vulnerable populations, etc. TEAR is currently in a period of transition having been adopted by Oxford University and the UK’s Social Research Association.  As it moves to this new setting, it is expected that new collections and the size of collections themselves will grow adding more depth and breadth to the collection. TEAR provides a unique and valuable resource to those applying for ethics and exploring ethical practice within a philosophical framework that supports knowledge and resource sharing. For more information see: www.tear.otago.ac.nz. Less

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The Hypotheticals: Case-based Approaches to Ethical Practice

Since 2006, commentators have been responding to The Hypotheticals, cases that we constructed to encourage reflection on key issues in research ethics in the social sciences and in the scholarship of teaching and learning

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American Anthropological Association – Research ethics resources

Published/Released on May 18, 2015 | Posted by Admin on May 31, 2015 | Keywords: , , , , , , , , , , ,

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Association of Internet Researchers

Published/Released on January 07, 2002 | Posted by Admin on May 31, 2015 | Keywords: , , , , , , , ,

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The Institute of Australian Geographers (IAG)

Published/Released on May 15, 2008 | Posted by Admin on May 30, 2015 | Keywords: , , ,

“Members of the IAG include geographers employed... More

“Members of the IAG include geographers employed in universities and research organisations, teachers, postgraduate students, geographers in local, state and national government departments and agencies or in the business sector, and people with just a serious interest in the subject. The links to the left and at the top of this page will enable you to find specific information on our activities, and about geography generally.” The IAG web site incorporates the IAG Code of Ethical Conduct - http://www.iag.org.au/about/code-of-professional-conduct/. Less

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The Australian Sociological Association (TASA)

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The Australian Anthropological Society (AAS)

Published/Released on August 15, 2003 | Posted by Admin on May 30, 2015 | Keywords: , , , , , , , , , ,

“The Australian Anthropological Society (AAS) In... More

“The Australian Anthropological Society (AAS) Inc was incorporated under New South Wales legislation in 1973 and represents the profession of anthropology in Australia. The Society recognises that anthropological work is broad in scope and includes academic research, teaching, consultancies, and public commentary. Members of the Society currently include a substantial proportion of the practising anthropologists in Australia, with some other members overseas in, for example, New Zealand, Papua New Guinea, and Fiji.” The AAS web site incorporates the AAS Code of Ethics - http://www.aas.asn.au/wp-content/uploads/2013/05/AAS_Code_of_Ethics-20121.pdf. Less

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University of the South Pacific’s HUMAN RESEARCH ETHICS: A Handbook for USP Researchers

“This Handbook explains the values and principle... More

“This Handbook explains the values and principles that guide processes and practices of research involving human participants at the University of the South Pacific. "The ethical values and principles described here apply to all University activities, to all its staff and student researchers including those visiting for short periods, and to any research agreements or partnerships that the University establishes. "The University’s human ethics will be compliant with the laws of individual University member states, particularly in relation to privacy, confidentiality, ownership, intellectual property requirements, research permit requirements and human rights.” Less

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Understanding Consent in Research Involving Children: The ethical Issues. A Handbook for Human Research Ethics Committees and Researchers

HANDBOOK This excellent resource was written by Dr Merle Spriggs, Children's Bioethics Centr... More

HANDBOOK This excellent resource was written by Dr Merle Spriggs, Children's Bioethics Centre with the following co-investigators: Associate Professor Lynn Gillam; Professor Colin Thomson; Associate Professor Justin Oakley. “This handbook together with a project website is an educational resource developed for Human Research Ethics Committees (HRECs) and researchers. The questions in this handbook are based on actual issues of concern expressed in key informant interviews with members of HRECs who review research involving children and young people and researchers who conduct that research.2 The questions reflect ethical issues that are being encountered by researchers and HREC members and the concerns on which they seek further guidance.”

PDF copy of the handbook

CASE STUDIES The case studies, questions and comments for A Handbook for Human Research Ethics Committees and Researchers.

PDF copy of the case studies

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Teaching Research Ethics Network

The TREN web site is an exciting outcome from Assoc Prof Lisa Wynn’s recent project (OLT-funded) on research ethics training for undergraduate and coursework students. In addition to discussing the results of the research (including case studies) the web site includes student training resources and sample applications for ethical review.

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Resources for Research Ethics Education

“The subject of this document is research ethics... More

“The subject of this document is research ethics. The focus of "research ethics" is a very practical one: How should we as researchers act? Unfortunately, the choices we face are not always clear. And even those cases that are clear may at times be better characterized as "right vs. right" rather than "right vs. wrong," For these reasons, our obligation is not necessarily to make the right decisions, but to strive to make the best possible decisions. In this context, "ethics" should not be confused with ethical theory, morality, and/or simply following the rules. "As you read this document, please consider it only a starting point. You are encouraged to raise questions and initiate discussion about these issues with your teachers, your mentors, your peers, or your students or trainees. These discussions are the foundation for promoting awareness and understanding of the highest standards of responsible conduct of research.” Less

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Research Ethics Online Training

Online training resource produced and hosted by Gl... More

Online training resource produced and hosted by Global Health Training Centre based upon an e-Learning course and resource package designed and produced by the World Health Organization (WHO) for use by internal staff. “Research is a vital ingredient for improved global health and scientifically sound and ethically appropriate research is especially important in resource-poor settings where the need for locally applicable research findings is so great. Therefore the WHO has very kindly granted permission for the adaption of this resource in a format and platform that is accessible to all. Less

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Keeping research on track: a guide for Aboriginal and Torres Strait Islander peoples about health research ethics

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Guidelines for the Ethical use of Digital Data in Human Research

Published/Released on May 28, 2015 | Posted by Admin on May 28, 2015 | Keywords: , , , , , , , ,

Clark, K. Duckham, M. Guillemin, M. Hunter, A. McV... More

Clark, K. Duckham, M. Guillemin, M. Hunter, A. McVernon, J. O’Keefe, C. Pitkin, C. Prawer, S. Sinnott, R. Warr, D. Waycott, J. (2015) Guidelines for the Ethical use of Digital Data in Human Research, The University of Melbourne, Melbourne.0. “The guidelines presented here have been developed to assist researchers who are conducting, and ethics committee members who are assessing, research involving digital data. Digital data presents researchers and ethics committees with familiar and novel ethical issues. Accepted strategies for managing issues such as privacy and confidentiality, and informed consent, need rethinking. The qualities of digital data, including its mobility and replicability, present new kinds of ethical issues which emerge in relation to data governance, data security and data management”. Less

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Guidelines for Ethical Research in Australian Indigenous Studies (GERAIS)

Published by the Australian Institute of Aboriginal and Torres Strait Islander Studies. This resource was first published in 2002 and was updated in 2... More

Published by the Australian Institute of Aboriginal and Torres Strait Islander Studies. This resource was first published in 2002 and was updated in 2010 and 2012. The guidelines outline 15 principles which should inform the conception, design, conduct and reporting the results of research Aboriginal and Torres Strait Islander peoples. Arguably the principles discussed in the GERAIS document are a far more useful reference for research outside of the health sciences compared to the NHMRC's Values and Ethics guidelines. "Indigenous peoples have inherent rights, including the right to self-determination. The principles in these Guidelines for Ethical Research in Australian Indigenous Studies are founded on respect for these rights, including rights to full and fair participation in any processes, projects and activities that impact on them, and the right to control and maintain their culture and heritage. AIATSIS considers that these principles are not only a matter of ethical research practice but of human rights. "It is essential that Indigenous people are full participants in research projects that concern them, share an understanding of the aims and methods of the research, and share the results of this work. At every stage, research with and about Indigenous peoples must be founded on a process of meaningful engagement and reciprocity between the researcher and Indigenous people. It should also be recognised that there is no sharp distinction between researchers and Indigenous people. Indigenous people are also researchers, and all participants must be regarded as equal partners in a research engagement." Less

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Griffith University Research Ethics Manual (GUREM)

A booklet-based resource manual for researchers and ethics reviewers. Rather than a rulebook the GUREM is a resource for reflective practice in human research. The 46 booklets cover a wide range of topics, such as recruitment, consent, social media in research and the exposure of illegal behaviour. Click here to see a list of the current booklets. The intended audience for the resource is researchers, ethics reviewers, policy/educational officers and commentators. Dr Gary Allen is the primary author of the GUREM. Further information about the GUREM:

1) Web page for the GUREM; 2) A list of the 46 booklets are available upon request; 3) Excerpt of booklets can be provided on request for evaluative purposes; and 4) The consolidated index of the GUREM can be accessed here.

Licenses are available to research institutions to use the GUREM... More

A booklet-based resource manual for researchers and ethics reviewers. Rather than a rulebook the GUREM is a resource for reflective practice in human research. The 46 booklets cover a wide range of topics, such as recruitment, consent, social media in research and the exposure of illegal behaviour. Click here to see a list of the current booklets. The intended audience for the resource is researchers, ethics reviewers, policy/educational officers and commentators. Dr Gary Allen is the primary author of the GUREM. Further information about the GUREM:

1) Web page for the GUREM; 2) A list of the 46 booklets are available upon request; 3) Excerpt of booklets can be provided on request for evaluative purposes; and 4) The consolidated index of the GUREM can be accessed here.

Licenses are available to research institutions to use the GUREM as the foundation of their resource material. The enduring license need only be purchased once for all researchers at that institution. For five years licensees will receive track change updates of any updates to the GUREM (e.g. arising from the rolling review of the National Statement on Ethical Conduct in Human Research and the new national application form). Click here to see information about previous updates to Booklets of the Manual. Less

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Guinea Pigs, Heroes & Desperate Patients: The History & Ethics of Human Research – Coursera unit on biomedical research ethics

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

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Expert Consultation on Optimization of Health Research Ethics Governance Systems in the Western Pacific Region | Meeting report | World Health Organisation | Manila, Philippines 10–12 October 2012

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Ethical research involving children

“ERIC aims to assist researchers and the research community to understand, plan and conduct ethical research involving children and young people in any geographical, social, cultural or methodological context. ERIC is motivated by a shared international concern that the human dignity of children is honoured and their rights and wellbeing... More

“ERIC aims to assist researchers and the research community to understand, plan and conduct ethical research involving children and young people in any geographical, social, cultural or methodological context. ERIC is motivated by a shared international concern that the human dignity of children is honoured and their rights and wellbeing are respected in all research, regardless of context. The critically important element in achieving this is YOU – your attitudes, values, beliefs, assumptions and practice – since these ultimately shape the research experience for children much more than any written procedures or checklist.” Less

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Conducting Research on the Internet (PDF) – British Psychological Society

Published/Released on July 30, 2007 | Posted by Admin on May 23, 2015 | Keywords: , , , , , ,

Report of the Working Party on Conducting Research... More

Report of the Working Party on Conducting Research on the Internet Guidelines for ethical practice in psychological research online "The term Internet Mediated Research (IMR) covers a wide range of research activities ranging from purely observational studies to surveys and in vivo quantitative studies to highly structured and well-controlled experiments. These guidelines supplement, rather than replace, the general ethical principles of the British Psychological Society (BPS, 2006), to allow for the additional ethical and practical issues inherent in IMR. Depending on the research design, participants in IMR can be identifiable or anonymous; they can explicitly consent to participate, or they can be invisibly observed without their knowledge. These two key dimensions (level of identifiability and level of observation) form the basis of the guidance offered in this document. Ten issues inherent when researching online are discussed. These are: verifying identity; public/private space; informed consent; levels of control; withdrawal; debriefing; deception; monitoring; protection of participants and researchers; and data protection." Less

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Clinical trial resources – Therapeutic Goods Administration

The TGA has brought together a number of essential... More

The TGA has brought together a number of essential resources for trial sponsors, institutions, administrators and review bodies. Institutions should decide whether to direct researchers to this site or to produce reference material (see as the GUREM see below) that references the material. Also on this page are TGA forms (such as the CTN/CTX forms and notes on Australia’s implementation of international standards (such as the Guidelines for Good Clinical Practice (CPMP/ICH/135/95)). Less

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Clinical Trials Research Agreements

Published/Released on October 01, 2011 | Posted by Admin on May 23, 2015 | Keywords: , , , , ,

“The NSW, Qld, Vic and SA Health Departments (th... More

“The NSW, Qld, Vic and SA Health Departments (the SEBS States), together with Medicines Australia, have developed four Clinical Trial Research Agreements (CTRAs) in order to provide template agreements that are fair and reasonable for both sponsors and institutions and provide certainty of application in the commercial trial environment. Some of the individual clauses have been the subject of long negotiation through this process.” Less

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The Clinical Ethics Resource

"The Clinical Ethics Resource provides an extensive range of resources addressing the ethical and legal issues experienced by those working in clinical environments. Health professionals face challenging issues on a daily basis. This website seeks to offer resources and best practice guidelines to assist with those decisions. The website is part of a larger study into the practice of clinical ethics in New South Wales, Australia. The aim of the project is to identify what resources are necessary to develop clinical ethics capacity within the New South Wales health system, for example providing clinical ethics committees and/or making clinical ethics training more widely available. This web-based resource is aimed at providing initial support to people who are looking for further information and resources. Search by topic to access guidelines, legislation, case law and position statements/policies of government authorities and professional bodies. We have also included references to some of the key... More

"The Clinical Ethics Resource provides an extensive range of resources addressing the ethical and legal issues experienced by those working in clinical environments. Health professionals face challenging issues on a daily basis. This website seeks to offer resources and best practice guidelines to assist with those decisions. The website is part of a larger study into the practice of clinical ethics in New South Wales, Australia. The aim of the project is to identify what resources are necessary to develop clinical ethics capacity within the New South Wales health system, for example providing clinical ethics committees and/or making clinical ethics training more widely available. This web-based resource is aimed at providing initial support to people who are looking for further information and resources. Search by topic to access guidelines, legislation, case law and position statements/policies of government authorities and professional bodies. We have also included references to some of the key articles and commentaries on particular topics. While our focus is on the position in New South Wales our collection of resources comes from all around Australia and the world. If you have additional resources that should be included, please get in touch”. Less

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Adelaide Centre for Bioethics and Culture

ACBC “is an independent, autonomous Centre committed to research into important bioethical issues affecting the whole community - locally, nationally and internationally. The Centre was established in 2012 in the South Australian capital, Adelaide, and now hosts the resources of the Southern Cross Bioethics Institute, which closed in 2012. The... More

ACBC “is an independent, autonomous Centre committed to research into important bioethical issues affecting the whole community - locally, nationally and internationally. The Centre was established in 2012 in the South Australian capital, Adelaide, and now hosts the resources of the Southern Cross Bioethics Institute, which closed in 2012. The Adelaide Centre for Bioethics and Culture adheres to universal human values, human rights, and the laws of humanity, including the inviolable and inalienable right to life of every member of the human family, whatever the age, status or ability of that member, from conception to natural death. Since bioethics addresses all kinds of issues faced by society in general, and particularly the very fundamental issues of human life and procreation which have at stake fundamental human rights, dignity and freedom, the Centre represents an effective contribution to the making of public policy in a non-party-political fashion. The staff of the Centre are involved in continuous bioethical research, writing, and professional consultation on various subjects like reproductive technology, ethical issues in care of the aged, abortion, euthanasia, biotechnology, embryo experimentation, organ donation, resource allocation and many others. The Adelaide Centre for Bioethics and Culture is a community resource. We have educational services for individuals, students, institutions, community groups and politicians of all political persuasions. The Centre provides expert comments and submissions to governments, research committees and international forums”. Less

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Academy of Social Sciences Research Ethics Sub-Section, UK

Published/Released on January 06, 2014 | Posted by Admin on May 20, 2015 | Keywords: , , ,

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