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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

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

Abuse of prisoners in the United States0

 

Mike Adorjan and Rose Ricciardelli’s edited collection, Engaging with Ethics in International Criminological Research, was recently published by Routledge. Of course, the book examines the likely suspects – ethical practices in relation to studies of policing, imprisonment and vulnerable populations. However, there are more unusual pieces on illuminating the Dark Net, carceral tours, and working in Hong Kong and China. My own contribution (Israel, 2016) examined the sad history of abuse of consent in research involving prisoners and prisons in the United States. It is an account of the exploitation of prisoners and a failure of criminologists to have any impact on the regulation and review of prison-based research.

Consent procedures have been created by research ethics regulators to protect research participants from abuse. In the United States, prisoners have been particularly vulnerable to the exploitative practices of researchers. However, contemporary consent procedures also stop researchers from uncovering institutional practices that exploit non-autonomous individuals. In doing so, research ethics regulation forms part of a broader strategy of self-protection established by public and private correctional services. Some scholars outside the United States have used covert research to evade prison protectionism. However, few have sought to link criminology’s understanding of state and state-corporate violence to the abuse of prisoners by researchers or extend their critique of protectionism to the work of research ethics regulators… I explore how requirements to obtain consent have been systematically evaded within prison-based research in the United States to the detriment of prisoners, but also how responses to scandal have led to the overprotection of institutions at the expense of prisoners’ ability to exercise autonomy, access justice, and benefit from the research process. Sadly, this chapter also demonstrates the apparent irrelevance of criminologists to the reform of regulation of research ethics in American prisons.

References

Israel, M (2016) A Short History of Coercive Practices: the Abuse of Consent in Research involving Prisoners and Prisons in the United States, in Adorjan, M and Ricciardelli, R (eds) Engaging with Ethics in International Criminological Research. London: Routledge. pp69-86. https://www.routledge.com/products/9781138938403

Contributor
Mark Israel is a senior consultant with AHRECS, adjunct professor of law and criminology at Flinders University and a visiting academic at The University of Western Australia.

This post may be cited as:
Israel M. (2016, 19 September) Abuse of prisoners in the United States. Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/abuse-prisoners-united-states

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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