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‘Except as required by law’: Australian researchers’ legal rights and obligations regarding participant confidentiality0

 

Anna Olsen, Research School of Population Health, ANU Julie Mooney-Somers, Centre for Values, Ethics and the Law in Medicine, University of Sydney
*Neither of us are lawyers and, as such, our interpretations are as social scientists and HREC members. Interested lawyers and legal scholars are encouraged to contribute!

Researchers’ promises of confidentiality are often easily and genuinely made. However, our experience in research ethics review (Julie through an NGO-run ethics review committee; Anna through formally constituted university and hospital human research ethics committees), in qualitative research and in teaching qualitative research ethics has led us to think about the limits of these promises.

Australian researchers generally rely on the National Statement (National Health and Medical Research Council, 2015) and Human Research Ethics Committees (HRECs) for guidance around ethical and legal conduct in research. For example, Chapter 4.6 in the National Statement notes that researchers may discover illegal activity and guides researchers and HRECs to consider what researchers might be obliged to disclose in a legal situation and how to best protect (and inform) participants of this threat to confidentiality.

The National Statement is currently under revision (National Health and Medical Research Council, 2016) and the review submitted for public consultation in late-2016 contains a proposal to include additional information on “Disclosure to third parties of findings or results” in Section 3 of the National Statement. Here the NHMRC explicitly state that: “There can be situations where researchers have a legal, contractual or professional obligation to divulge findings or results to third parties”. That is, researchers should concern themselves not only with the legal implications of revealing potential illegal activity, but any instance in which they may be asked to break participant confidentiality.

The recent review of the National Statement extends the NHMRC recommendations around potential data disclosure in a number of ways: it makes much more explicit that researchers (as opposed to HRECs or institutions) are responsible for understanding the risks to patient confidentiality: “researchers should be aware of situations where a court, law enforcement agency or regulator may seek to compel the release of findings or results”. Researchers are expected to anticipate legal risks to participant confidentiality by: identifying “(a) whether, to whom and under what circumstances the findings or results will be disclosed; (b) whether potential participants will be forewarned that there may be such a disclosure; (c) the risks associated with such a disclosure and how they will be managed; and (d) the rationale for communicating and/or withholding the findings or results and the relative benefits and/or risks to participants of disclosure/non-disclosure”. And, researchers should advise participants on legal risks to confidentiality and how they will be handled: “(a) have a strategy in place to address this possibility; (b) advise participants of the potential for this to occur; and (c) advise participants as to how the situation will be managed”.

For many researchers in health, legal risks are a very vague reality and legal intervention a remote threat. They may feel confident that their research does not and will not uncover illegal activity, or that their data would simply be irrelevant to a legal case. Or they may feel confident that they have taken sufficient steps to protect their participants’ confidentiality by following guidelines; researchers working in illicit drug use, for example.

Many Australian HRECs articulate the NHMRC guidelines on legal risks of disclosure to third parties by requiring that researchers inform participants that any data collected during research will kept confidential, “except as required by law”. In keeping with the ethical concept of informed consent, participants are thereby warned that researchers are not able to unconditionally offer confidentially. It has become clear to us that the intention of this phrase, to flag the legal limits of confidentiality, is not well understood by researchers (Olsen & Mooney-Somers, 2014).

The National Statement details some aspects of human research that is subject to specific statutory regulation however stresses that compliance with legal obligations is not within the scope of the National Statement: “It is the responsibility of institutions and researchers to be aware of both general and specific legal requirements, wherever relevant”. Moreover, in the document we are directed that it is not the role of a HREC to provide legal advice. It is relatively rare for Australian HRECs to provide explicit guidance on the relevant legal obligations for researchers, including: how they differ across jurisdictions; what protective strategies researchers could employ to better protect patient confidentiality; or how to best inform participants about the risks of legal action (Some useful HREC-produced resources are Alfred Hospital Ethics Committee, 2010; QUT Office of Research Ethics and Integrity, 2016) Criminology scholars have (unsurprisingly) considered these issues in their own field (Chalmers & Israel. 2005; Israel, 2004; Israel & Gelsthorpe, 2017; Palys & Lowman, 2014).

We believe there are real risks to participants, researchers and research institutions.

Recent international cases of research dealing with illegal activity becoming subject to legal action include The Belfast Project/The Boston Tapes (BBC News, 2014; Emmerich, 2016; Israel, 2014) and Bradley Garrett’s ethnographic work with urban explorers (Fish, 2014; Times Higher Education, 2014) (See also Israel & Gelsthorpe, 2017). On the whole, legal action was anticipatable in these cases as they involved illicit activities and the legal action was driven by law enforcement interest. In some instances, researchers took extensive steps to protect participant confidentiality. In other cases the promise of absolute confidentiality seems a little naïve (and in our opinion, perhaps negligent).

Perhaps of more concern are cases in which legal action was instigated by interested others, not law enforcement. Of particular interest to us are recent cases of tobacco companies using Freedom of Information laws in Australia to obtain research data from Cancer Council Victoria on young people’s attitudes to and use of tobacco, and an earlier attempt to seek data on adults from Cancer Council NSW (McKenzie & Baker, 2015; Schetzer & Medew, 2015). As these cases do not involve illegal activity, it is much less likely that researchers could have anticipated the specific legal actions that undermined participant confidentiality. (The tobacco industry has taken these actions in other countries (Hastings, 2015; McMurtrie, 2002)).

Our point here is that the promise of confidentiality should never be casually made. Researchers have an ethical obligation to think through what “except as required by law” may mean for each particular research project. Although it has been argued elsewhere that as professionals, researchers should be provided the same participant confidentiality rights as doctors and lawyers (Emmerich, 2016), the current state of affairs is that research data is not (necessarily) safe from legal, contractual or professional obligation to divulge findings or results to third parties.

References:

Alfred Hospital Ethics Committee. (2010, Updated September 2016). Alfred Hospital ethics committee guidelines: Research that potentially involves legal risks for participants and researchers. Retrieved from https://www.alfredhealth.org.au/contents/resources/research/Research-involving-legal-risks.pdf

BBC News. (1 May 2014). What are the Boston tapes? Retrieved from http://www.bbc.com/news/uk-northern-ireland-27238797

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

Emmerich, N. (9 December 2016). Why researchers should get the same client confidentiality as doctors. Retrieved from https://theconversation.com/why-researchers-should-get-the-same-client-confidentiality-as-doctors-69839

Fish, A. (23 May 2014). Urban geographer’s brush with the law risks sending cold chill through social science. Retrieved from https://theconversation.com/urban-geographers-brush-with-the-law-risks-sending-cold-chill-through-social-science-25961

Hastings, G. (31 August 2015). We got an FOI request from Big Tobacco – here’s how it went. Retrieved from https://theconversation.com/we-got-an-foi-request-from-big-tobacco-heres-how-it-went-46457

Israel, M. (2004). Strictly confidential? Integrity and the disclosure of criminological and socio-legal research. British Journal of Criminology, 44(5), 715-740.

Israel, M. (6 May 2014). Gerry Adams arrest: when is it right for academics to hand over information to the courts? Retrieved from https://theconversation.com/gerry-adams-arrest-when-is-it-right-for-academics-to-hand-over-information-to-the-courts-26209

Israel, M., & Gelsthorpe, L. (2017). Ethics in Criminological Research: A Powerful Force, or a Force for the Powerful? . In M. Cowburn, L. Gelsthorpe, & A. Wahidin (Eds.), Research Ethics in Criminology and Criminal Justice: Politics, Dilemmas, Issues and Solutions. London: Routledge.

McKenzie, N., & Baker, R. (15 August 2015). Tobacco company wants schools survey for insights into children and teens. The Age. Retrieved from http://www.theage.com.au/national/tobacco-company-wants-schools-survey-for-insights-into-children-and-teens-20150819-gj2vto.html

McMurtrie, B. (8 February 2002). Tobacco companies seek university documents. Chronicle of Higher Education. Retrieved from http://www.chronicle.com/article/Tobacco-Companies-Seek/6959

National Health and Medical Research Council. (2015). National Statement on Ethical Conduct in Human Research (2007) Retrieved from https://www.nhmrc.gov.au/printpdf/book/export/html/51613

National Health and Medical Research Council. (2016). Public consultation on Section 3 (chapters 3.1 & 3.5), Glossary and Revisions to Section 5: National Statement on Ethical Conduct in Human Research (2007). Retrieved from https://consultations.nhmrc.gov.au/files/consultations/drafts/ns-section3-public-consultation.pdf

Olsen, A., & Mooney-Somers, J. (2014). Is there a problem with the status quo? Debating the need for standalone ethical guidelines for research with people who use alcohol and other drugs. Drug Alcohol Rev, 33(6), 637-642. doi:10.1111/dar.12140

Palys, T., & Lowman, J. (2014). Protecting research confidentiality: What happens when law and ethics collide. Toronto: Lorimer.

QUT Office of Research Ethics and Integrity. (10 Novembeer 2016). Participants and illegal activities. Retrieved from http://www.orei.qut.edu.au/human/guidance/illegal.jsp

Schetzer, A., & Medew, J. (20 August 2015). Cancer Council spends thousands fighting big tobacco over children’s survey data. The Sydney Morning Herald. Retrieved from http://www.smh.com.au/national/cancer-council-spends-thousands-fighting-big-tobacco-over-childrens-survey-data-20150820-gj3nh7.html

Times Higher Education. (5 June 2014). Place-hacker Bradley Garrett: research at the edge of the law. Retrieved from https://www.timeshighereducation.com/features/place-hacker-bradley-garrett-research-at-the-edge-of-the-law/2013717.article

Contributors

Anna Olsen is a Senior Lecturer at the Research School of Population Health, Australian National University. She leads a number of qualitative and mixed methods public health research projects, teaches qualitative research methods and supervises post-graduate students. Dr Olsen is an experienced member of formally constituted university and hospital human research ethics committees. https://researchers.anu.edu.au/researchers/olsen-phd-am

Julie Mooney-Somers is a Senior Lecturer in Qualitative Research in the Centre for Values, Ethics and the Law in Medicine, University of Sydney. She is the director of the Masters of Qualitative Health Research at the University of Sydney. An experienced qualitative researcher, teacher and supervisor, she has taught qualitative research ethics and sat on a NGO-run ethics review committee for six years. http://sydney.edu.au/medicine/people/academics/profiles/julie.mooneysomers.php and http://www.juliemooneysomers.com

This post may be cited as:
Olsen A, and Mooney-Somers J. (2017, 24 February) ‘Except as required by law’: Australian researchers’ legal rights and obligations regarding participant confidentiality. Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/except-required-law-australian-researchers-legal-rights-obligations-regarding-participant-confidentiality

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 publications1

 

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

Making Indigenous research ethics a compulsory facet of supervisor development and student training1

 

There is an increasing trend in Australian universities to provide professional development for supervisors of higher degree research (HDR) students (Whisker & Kiley, 2014). Concurrently there is also a move toward more structured research development programs for HDR candidates (McGagh et.al., 2016). Education in Indigenous research ethics for both these groups is essential if we are to ensure that research with Indigenous Australian peoples and communities is ethical. Particularly in relation to nonmaleficence and beneficence; key aspects underlined by the Australian Institute of Aboriginal and Torres Strait Islander Studies and the National Health & Medical Research Council guidelines on Indigenous research. Although it is difficult to quantify, given the lack of an explicit research codes for much Indigenous research, even a cursory look at outcomes of major competitive grants schemes suggests that there is considerable research being undertaken in Indigenous communities by both Indigenous and non-Indigenous researchers. Human Research Ethics Committee (HREC) procedures provide both guidance to researchers and a buffer to communities through the mechanism of the Aboriginal and Torres Strait Islander ‘appendix’ which ensures that researchers address the key issues of harm, consent and benefit. However, the HRECs should not have sole responsibility in this area.

This is not to say that HRECs do not have a role in this area, but we suggest that HREC responsibility needs to be part an integrated educative framework of Indigenous research development for both HDR students, their supervisors and indeed any researcher undertaking Indigenous research (Trudgett, 2011, Trudgett et.al., 2016). We suggest that Graduate Research Schools and those responsible for education and ongoing development of supervisors and HDR students need to prioritise this area of research education. In our experience, this work is too often ad hoc and left to Indigenous academics who are, in some cases, called on to provide expert advice without appropriate recognition in terms of being a formal part of supervision teams or being part of their usual academic roles. While there continues to be significant under-representation of Indigenous academics working in Australian universities (Behrendt, et.al., 2012), the need for this advisory work can be frustrating for supervisors seeking advice from a limited pool and even more so, for Indigenous academics who are already burdened by considerable unrecognised work (Page & Asmar, 2008).

On a more positive note there are increasing numbers of more senior Indigenous academics who can contribute to this area of universities work. At our own institution, our team from the Centre for the Advancement of Indigenous Knowledges, regularly provide education for HDR students and their supervisors as part of the UTS Graduate Research School’s structured researcher development program. In the context of the ACOLA Review and the recent Universities Australian draft Indigenous Strategy (Universities Australia, 2016) which indicates that universities should take steps to increase the numbers of Indigenous HDR students, the need for improved capacity in Indigenous research and ethics is clear. It is imperative that Graduate Research Schools and those responsible for research training take steps to actively address this issue. To conclude, universities need to dedicate appropriate resources to the development of supervisors responsible for overseeing the candidature of Indigenous and non-Indigenous postgraduate students undertaking Indigenous research and avoid delegating such responsibility to their existing Indigenous staff without additional resources and acknowledgement.

References

Behrendt, L., Larkin, S., Griew, R., & Kelly, P. (2012). Review of higher education access and outcomes for Aboriginal and Torres Strait Islander People: Final Report. Canberra: Department of Industry, Innovation, Science, Research and Tertiary Education.

McGagh, J, Marsh, H, Western, M, Thomas, P, Hastings, A, Mihailova, M, Wenham, M (2016) Review of Australia’s Research Training System. Report for the Australian Council of Learned Academies, www.acola.org.au.

Page, S. & Asmar, C. (2008) ‘Beneath the teaching iceberg: Exposing the hidden support dimensions of Indigenous academic work.’ Australian Journal of Indigenous Education, Vol 37S, pp. 109-117.

Trudgett, M. (2011). Western places, academic spaces and Indigenous faces: supervising Indigenous Australian postgraduate students. Teaching in Higher Education, 16(4), 389-399.

Trudgett, M., Page, S., & Harrison, N. (2016). Brilliant Minds: A Snapshot of Successful Indigenous Australian Doctoral Students. The Australian Journal of Indigenous Education, 45(1), 70-79.

Universities Australia. (2016). Indigenous Strategy 2017 – 20120, Draft for consultation, November, 2016, circulated to universities, 17/11/16.

Wisker, G., & Kiley, M. (2014). Professional learning: lessons for supervision from doctoral examining. International Journal for Academic Development, 19(2), 125-138.

Contributors
Susan Page – Susan.page@uts.edu.au | CAIK profile
Michelle Trudgett – Michelle.trudgett@uts.edu.au | CAIK profile

Centre for the Advancement of Indigenous Knowledges, University of Technology Sydney. http://www.uts.edu.au/research-and-teaching/our-research/centre-advancement-indigenous-knowledges

This post may be cited as:
Page S andTrudgett M. (2016, 25 November) Making Indigenous research ethics a compulsory facet of supervisor development and student training. Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/making-indigenous-research-ethics-compulsory-facet-supervisor-development-student-training