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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Review of the Australian Code for the Responsible Conduct of Research1

 

The Australian Code for the Responsible Conduct of Research 2007 (the Code) is Australia’s premier research standard. It was developed by the government agencies that fund the majority of research in Australia, namely the National Health and Medical Research Council (NHMRC) and the Australian Research Council, in collaboration with the peak body representing Australian universities (Universities Australia). The Code guides institutions and researchers in responsible research practices and promotes research integrity. The Code has broad relevance across all research disciplines.

The Code is currently under review.

A new approach for the Code has been proposed, informed by extensive consultation with the research sector and advice from expert committees. The Code has been streamlined into a principles-based document and will be supported by guides that provide advice about implementation, such as the first Guide to investigating and managing potential breaches of the Code.

NHMRC, ARC and UA recognise the importance of engaging with the Australian community, including research institutions, researchers, other funding bodies, academies and the public, to ensure the principles-based Code and supporting guides are relevant and practical. A public consultation strategy is an important part of any NHMRC recommendation or guideline development process.

As such, NHMRC on behalf of ARC and UA invites all interested persons to provide comments on the review. A webinar was held on 29 November 2016 to explain the new approach to the Code. You are invited to view this webinar (see link below) and can participate in the public consultation process by visiting the NHMRC Public Consultation website. Submissions close on 28 February 2017.

Further information on the review can be found here.

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The contributor:

National Health and Medical Research Council (Australia) – Web | Email

This post may be cited as:
NHMRC (2017, 20 January) Review of the Australian Code for the Responsible Conduct of Research. Research Ethics Monthly. Retrieved from:
https://ahrecs.com/research-integrity/review-australian-code-responsible-conduct-research

Ethical use of visual social media content in research publications2

 

At a research ethics workshop at the 2015 CSCW conference (Fiesler et al., 2015), researchers in our community respectfully disagreed about using public social media data for research without the consent of those who had posted the material. Some argued that researchers had no obligation to gain consent from each person whose data appeared in a public social media dataset. Others contended that, instead, people should have to explicitly opt in to having their data collected for research purposes. The issue of consent for social media data remains an ongoing debate among researchers. In this blog post, we tackle a much smaller piece of this puzzle, focusing on the research ethics but not the legal aspects of this issue: how should researchers approach consent when including screenshots of user-generated social media posts in research papers? Because analysis of visual social media content is a growing research area, it is important to identify research ethics guidelines.

We first discuss a few approaches to using user-generated social media images ethically in research papers. In a 2016 paper that we co-authored, we used screenshots from Instagram, Tumblr, and Twitter to exemplify our characterizations of eating disorder presentation online (Pater, Haimson, Andalibi, & Mynatt, 2016). Though these images were posted publicly, we felt uncomfortable using them in our research paper without consent from the posters. We used an opt-out strategy, in which we included content in the paper as long as people did not explicitly opt out. We contacted 17 people using the messaging systems on the social media site where the content appeared, gave them a brief description of the research project, and explained that they could opt out of their post being presented in the paper by responding to the message. We sent these messages in May 2015, and intended to remove people’s images from the paper if they responded before the paper’s final submission for publication five months later in October 2015. Out of the 17 people that we contacted, three people gave explicit permission to use their images in the paper, and the remaining 14 did not respond. Though this was sensitive content due to the eating disorder context, it did not include any identifiable pictures (e.g. a poster’s face) or usernames. While we were not entirely comfortable using content from the 14 people who did not give explicit permission, this seemed to be in line with ethical research practices within our research community (e.g. (Chancellor, Lin, Goodman, Zerwas, & De Choudhury, 2016), who did not receive users’ consent to use images, but did blur any identifiable features). We ultimately decided that including the images did more good than harm, considering that our paper contributed an understanding of online self-presentation for a marginalized population, which could have important clinical and technological implications. Another paper (Andalibi, Ozturk, & Forte, 2017) took a different approach to publishing user-generated visual content. Because the authors had no way of contacting posters, they instead created a few example posts themselves, which included features similar but not identical to the images in the dataset, to communicate the type of images they referenced in the paper. This is similar to what Markham (2012) calls “fabrication as ethical practice.”

This opt-out approach is only ethical in certain cases. For instance, it is not in line with the Australian National Statement on Ethical Conduct in Human Research (National Health and Medical Research Council, 2012), which we assume was not written with social media researchers as its primary audience. NHMRC’s Chapter 2.3 states that an opt-out approach is only ethical “if participants receive and read the information provided.” In a social media context, people may not necessarily receive and read information messaged to them. Additionally, researchers and ethics committees may not agree on whether or not these people are “participants” or whether such a study constitutes human subjects research. When using non-identifiable images, as we did in our study described above, and when the study’s benefit outweighs potential harm done to those who posted the social media content, we argue that an opt-out approach is appropriate. However, an opt-out approach becomes unethical when sensitive, personally-identifiable images are included in a research paper, as we discuss next.

While issues of consent when using social media content in research papers remains a thorny ongoing discussion, in certain instances we believe researchers’ decisions are more clear-cut. If social media content is identifiable – that is, if the poster’s face and/or name appears in the post – researchers should either get explicit consent from that person, de-identify the image (such as by blurring the photo and removing the name), or use ethical fabrication (Markham, 2012). Particularly, we strongly argue that when dealing with sensitive contexts, such as stigmatized identities or health issues, a person’s face and name should not be used without permission. As an example, let’s say that a woman posts a picture of herself using the hashtag #IHadAnAbortion in a public Twitter post. A researcher may argue that this photo is publicly available and thus is also available to copy and paste into a research paper. However, this ignores the post’s contextual integrity (Nissenbaum, 2009): when taking the post out of its intended context (a particular hashtag on Twitter), the researcher fundamentally changes the presentation and the meaning of the post. Additionally, on Twitter, the poster has the agency to delete[1] the post at her discretion, a freedom that she loses when it becomes forever embedded into a research paper and all of the digital and physically distributed copies of that paper. Thus, we argue that when including identifiable social media data in papers, researchers should be obligated to receive explicit permission from the person who posted that content, should they wish to include that image in the paper.

[1] Though all tweets are archived by the Library of Congress and thus not fully deletable, they are not readily accessible by the public, and even by most researchers. Furthermore, Twitter’s Terms of Service require those who collect data to periodically check for and remove deleted tweets from their datasets, though it is not clear whether this applies to the Library of Congress (Twitter, n.d.).

References:

Andalibi, N., Ozturk, P., & Forte, A. (2017). Sensitive Self-disclosures, Responses, and Social Support on Instagram: The Case of #Depression. In Proceedings of the 20th ACM Conference on Computer-Supported Cooperative Work & Social Computing. New York, NY, USA: ACM. http://dx.doi.org/10.1145/2998181.2998243

Chancellor, S., Lin, Z., Goodman, E. L., Zerwas, S., & De Choudhury, M. (2016). Quantifying and Predicting Mental Illness Severity in Online Pro-Eating Disorder Communities. In Proceedings of the 19th ACM Conference on Computer-Supported Cooperative Work & Social Computing (pp. 1171–1184). New York, NY, USA: ACM. https://doi.org/10.1145/2818048.2819973

Fiesler, C., Young, A., Peyton, T., Bruckman, A. S., Gray, M., Hancock, J., & Lutters, W. (2015). Ethics for Studying Online Sociotechnical Systems in a Big Data World. In Proceedings of the 18th ACM Conference Companion on Computer Supported Cooperative Work & Social Computing (pp. 289–292). New York, NY, USA: ACM. https://doi.org/10.1145/2685553.2685558

Markham, A. (2012). Fabrication as Ethical Practice. Information, Communication & Society, 15(3), 334–353. https://doi.org/10.1080/1369118X.2011.641993

National Health and Medical Research Council. (2012, February 10). Chapter 2.3: Qualifying or waiving conditions for consent. Retrieved December 13, 2016, from https://www.nhmrc.gov.au/book/national-statement-ethical-conduct-human-research-2007-updated-december-2013/chapter-2-3-qualif

Nissenbaum, H. (2009). Privacy in Context: Technology, Policy, and the Integrity of Social Life. Stanford University Press.

Pater, J. A., Haimson, O. L., Andalibi, N., & Mynatt, E. D. (2016). “Hunger Hurts but Starving Works”: Characterizing the Presentation of Eating Disorders Online. In Proceedings of the 19th ACM Conference on Computer-Supported Cooperative Work & Social Computing (pp. 1185–1200). New York, NY, USA: ACM. https://doi.org/10.1145/2818048.2820030 Twitter. (n.d.). Developer Agreement & Policy —

Twitter Developers. Retrieved December 13, 2016, from https://dev.twitter.com/overview/terms/agreement-and-policy

The contributors:
Oliver L. Haimson (University of California, Irvine) – EmailBio
Nazanin Andalibi (Drexel University) – Bio
Jessica Pater (Georgia Institute of Technology) – Bio

This post may be cited as:
Haimson O, Andalibi N and Pater J. (2016, 20 December) Ethical use of visual social media content in research publications. Research Ethics Monthly. Retrieved from:
https://ahrecs.com/uncategorized/ethical-use-visual-social-media-content-research-publications

We don’t need a definition of research misconduct2

 

Responsibilities for ensuring the integrity of the research record rests with a number of players – funding agencies, governments, publishers, journal editors, institutions who conduct research and the researchers themselves. Our responsibilities for providing research that is honest and trustworthy are extant at the very beginning of a research project and ever present thereafter. If one of the players in the research ecosystem finds that research isn’t honest or can’t or shouldn’t be trusted then we have to take steps to remove it from the research record or stop it from getting there. We don’t need a definition of research misconduct in order to do that.

In fact, there isn’t a definition of research misconduct, and this is part of the problem. Resnik et.al. describe this in their 2015 paper that reviewed and categorized misconduct definitions from 22 out of the top 40 research and development funding countries. They claim that the variation in research misconduct definitions might make it harder for potential complainants to raise a concern because they can’t work out whether something might be misconduct in any particular jurisdiction. Similar research by Resnik et.al. also looked at research misconduct definitions in US universities, and found that the majority go beyond the definition provided in US law, perhaps indicating that these universities recognise that there is more than falsification, fabrication and plagiarism that can impact on the honesty and trustworthiness of the research record. A ‘back of the envelope’ review of Australian research misconduct policies paints a similar picture with two broad clades – one that centres on research misconduct as a serious deviation from accepted practice and the other that requires misrepresentation. All of this means that saying Professor Y committed research misconduct doesn’t really mean much, and doesn’t tell us how the research is dishonest or untrustworthy. It stops us from making our own assessment of the trustworthiness of the research.

Many definitions also require that it can be shown that the researcher responding to the allegation committed the act of research misconduct, however defined, deliberately or intentionally or with recklessness or negligence. This ‘mental fault’ element is used to distinguish those lapses in responsible research that are honest mistakes or accidental from deliberate, mischievous attempts to deceive the users of the research output, whether that is a journal article, lab meeting presentation or grant application. The inclusion of this mental fault element also focusses the attention of those considering complaints or serving on investigation panels on the minds of the ‘accused’ – the investigations very much become concentrated on whether Professor Y was really trying to be evil and not whether the research should be trusted and allowed to have impact.

We believe that this is the fundamental question a research integrity investigation should be considering – can we trust the research and would we be happy for it to have impact?

Consideration of mental fault (mens rea if you’re a lawyer) is important when considering what disciplinary action to take, but is best not part of the rubric when considering trustworthiness, accuracy or honesty of research.

Research conduct occurs on a spectrum – from excellent research conduct at one end to research misconduct at the other. It is not only those deliberate or grossly negligent acts that cause us to question the honesty or trustworthiness of research. There are a range of behaviours that impact on the integrity of research and many of these are neither deliberate nor FFP. Some of these are described in the seminal paper by Martinson et.al. that reports on results of a survey of biomedical researchers. The most frequent ‘questionable research practices’ described in this paper include inadequate record keeping related to research projects (27.5% of researchers), ‘dropping observations or data based on gut feeling’ (15.3%) and ‘using inadequate or inappropriate research designs’ (13.5%). It is clear that these three QRPs will impact on the trustworthiness and accuracy of research findings, and the incidence of these QRPs is much greater than the 0.3% reported for ‘falsifying or cooking research data’. These and other QRPs fall outside of many definitions of research misconduct, and so can be overlooked by institutions forced or who choose to focus on research misconduct as defined. This leaves a broad range of activities potentially unchecked, and research on the record that perhaps really shouldn’t be.

Removing the definition of research misconduct simplifies the landscape. Investigations won’t need to consider the motivation for a departure from accepted practice or breach, but only if the research can be trusted or should be allowed to have impact. Disciplinary action can still happen through other misconduct related processes and this is where deliberation and intent can and should be considered. A system like this already exists. The Canadian Tri-agency Framework for Responsible Conduct of Research does not define research misconduct but instead sets out very clearly articulated principles for research integrity. A breach of these principles can trigger an investigation and consideration of deliberation or intent is not part of the framework. The absence of a definition has not stopped Canadian funding agencies taking appropriate action. Recently, the first disclosure of an investigation was made. It names the researcher responsible and provides detail about the nature of the breach and the action taken by the funding agency involved.

Research misconduct is not a well-defined term, but a better definition is not needed and is not the solution. We need to take action to protect the integrity of the research record and stop untrustworthy or dishonest research from reaching it. We can do that just as well or even better without narrowing the scope of these considerations.

References

David B. Resnik J.D.,Ph.D., Lisa M. Rasmussen Ph.D. & Grace E. Kissling Ph.D. (2015) An International Study of Research Misconduct Policies, Accountability in Research, 22:5, 249-266, DOI: 10.1080/08989621.2014.958218

David B. Resnik J.D., Ph.D., Talicia Neal M.A., Austin Raymond B.A. & Grace E. Kissling Ph.D. (2015) Research Misconduct Definitions Adopted by U.S. Research Institutions, Accountability in Research, 22:1, 14-21, DOI: 10.1080/08989621.2014.891943

Nature 435, 737-738 (9 June 2005) | doi:10.1038/435737a

Contributors
Paul M Taylor, RMIT University (bio) – paul.taylor@rmit.edu.au
Daniel P Barr, University of Melbourne (bio)- dpbarr@unimelb.edu.au

This post may be cited as:
Taylor P and Barr DP. (2016, 25 October) We don’t need a definition of research misconduct. Research Ethics Monthly. Retrieved from: https://ahrecs.com/research-integrity/dont-need-definition-research-misconduct

Applying Place to Research Ethics and Cultural Competence Training0

 

In the 1990s, I worked with many community groups and Native American/African-American communities on the difficult challenges of understanding environmental health risks from low-level radiation contamination. These place-based communities and cultural groups were downwind from nuclear weapons production facilities which had massive deliberate and accidental releases of radiation since their operations began during and after World War II. In the health organizing work I had conducted, I was not aware of the potential of research ethics guidelines to bring more beneficence and protection to these populations and their geographic communities. Soon after formal ethical investigations produced findings of cultural ignorance and a lack of knowledge of research ethics by many researchers involved with human radiation experiments, I decided to pursue doctoral studies to promote ethical protections for place-based communities. After receiving my PhD and doing some extensive studies of bioethical principles and their potential to be applied to groups/communities and place, I have been able to publish new studies/practices in this area. With much support both from National Institute for Health and the National Science Foundation and their grant programs on research ethics training, I have worked with several collaborators to promote research ethics training for graduate students in environmental health/sciences, natural resource sciences and engineering (Quigley et al 2015, see NEEP website http://www.brown.edu/research/research-ethics/neep).

In this blog, I provide a discussion of human subjects protections being extended to the protection of the spatial setting, the place-based identities and meanings of individual and group human subjects in their local communities. In a recent paper (Quigley 2016), I argued for this protection both from recommendations that already exist in bioethical guidelines (National Bioethics Advisory Committee (NBAC) and Council for the International Organization of Medical Sciences (CIOMS) and from field studies that demonstrate important lessons for protection of place and place-based identities. The bioethical principles of beneficence, nonmaleficence, respect for persons/respect for communities and justice are reviewed in this article with detailed guidance about each principle as it relates to protecting place and place-based identities.

  • Regulatory guidance exists in terms of the need for researchers to provide benefits to researched populations, to reduce exploitation particularly to racial/cultural and resource-poor groups who are vulnerable subjects, and to allow community consultation on the risks and benefits of research designs. Many resource-poor and politically powerless communities are directly dependent on the subsistence resources of their local spatial settings. Research interventions should not harm these conditions but instead produce beneficial change. Reasonably available benefits should be determined with local representatives (health care providers, community representatives, advocacy groups, scientists and government officials). Such consultation will help to reduce harms, particularly relevant to indigenous groups when the social risks of research can cause disrespect of cultural beliefs, traditions, world views, the violation of local protocols, social stigmatization, and discriminatory harms. For example, in studies of landscape planning, academic researchers co-collaborated with Native community leaders to adopt community-based designs on walking/bike paths, community gardens, mixed use and conservation with housing needs (Thering 2011). Dangles et al (2010) worked with community consultation to ensure that environmental monitoring for control of pests in Andean potato farming and for climate and soil conditions was conducted with community members and particularly with the youth who received training on monitoring technologies which helped to improve youth training opportunities and reduce youth migration. With community collaboration, local community-based benefits can be identified and integrated into technical research plans to improve beneficence.

, I have described how research interventions with cultural groups do require a deep study and practice of an “environmental” cultural competence by researchers, particularly for place-based identities, meanings and past conditions (Quigley 2016b).

There are abundant field studies on new participatory approaches to field research with local communities (see Bibliographies on NEEP website), many of which incorporate collaborative learning about place-based meanings which then lead to research designs which produce local benefits along with technical research activities (capacity-building, skills development, youth outreach, access to critical services, local knowledge guidance about local conditions/resources) These community-based and culturally-competent interventions help to promote the “justice” principle, achieving fair representation, recruitment and fair benefits/burdens for these place-based settings. IRBs are learning more about social risks and community-based protections to ensure more fair treatment, fair benefits and to reduce unintended harms to researched communities.

References

Quigley, D. D. Sonnenfeld, P. Brown, L. Silka, Q. Tian. L. He. Research Ethics Training on Place-based Communities and Cultural Groups. Journal of Environmental Studies and Sciences, DOI 10.1007/s13412-015-0236-x , published online, March 29, 2015.

Quigley, D. (2016a) Applying Place to Research Ethics and Cultural Competence/Humility Training. Journal of Academic Ethics, published online 13 January, Springer

Quigley, D. (2016b) “Building Cultural Competence in Environmental Studies and Natural Resource Sciences”. Society and Natural Resources, 29:6, 725-737.

Contributor
Dianne Quigley, PhD is an Adjunct Assistant Professor at Brown University’s Science and Technology Studies Program and can be contacted at Dianne_Quigley_1@brown.edu

This post may be cited as:
Quigley D. (2016, 22 August) Applying Place to Research Ethics and Cultural Competence Training.Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/applying-place-research-ethics-cultural-competence-training

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