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

Resource Library

Research Ethics MonthlyAbout Us

Ethical review

Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Stop centring Western academic ethics: deidentification in social science research – Anna Denejkina0

 

This blog will provide a discussion of issues present in deidentifying marginalised research participants, or research participants who request to be identified, in the publication of qualitative research. As my research is mixed-method (quantitative and multi-method qualitative) it included several data collection techniques and analyses. For this discussion, I will specifically focus on the face-to-face and Skype interviews I conducted with participants in Russia and the United States.

My PhD study investigates intergenerational transmission of combat-related trauma from parent to child, focusing on the Soviet–Afghan war, 1979–89. This research includes interviews with Soviet veterans and family members of veterans; it was these interviews that raised questions of participant erasure and agency. From 12 face-to-face and Skype interview participants, one participant requested complete deidentification; one requested that their real name not be used but their location and other identifying details remain; two participants requested that only their first names be used and their location and other identifying details remain; the eight remaining participants requested that they be fully identified, with some participants sending me photographs of them and their families for inclusion in research publications. Given the social and political sensitivity that persists in Eastern Europe around the discussion of the Soviet invasion into Afghanistan, I had to consider and discuss with participants that requested they be identified the issue of their safety.

My research participants are marginalized participants by virtue of the topic of my research, the Soviet–Afghan war, and the ongoing silencing treatment they’ve received during and following the war by the state:

To take just two examples: in the hope of obscuring the true impact of the war, some local authorities refused to allow special areas in cemeteries to be set apart for the graves of soldiers killed in Afghanistan; while others forbade the cause and place of death to be stated on gravestones or memorial shields. (Aleksievich, Whitby & Whitby 1992, p.5–6)

Given academic broad-stroke standards of deidentifying research participants, we must review the ethics of this practice as it can promote and perpetuate erasure of marginalised participants and the silencing of their voices. Some textbooks on the topic of ethics in the social sciences approach anonymity and deidentification of participants from the angle that anonymity is part of the basic expectations of a research participant, without elaborating that anonymity is not always desirable nor ethical (see for example Ransome 2013), essentially replicating the medical model of human research ethics developed for the regulation of biomedical research in the United States (Dingwall 2016, p.25). Such an approach does not address the issues of presenting anonymity as a status-quo in social research, and makes a sweeping – and a Western academic – generalisation that anonymity is one of the vital assurances researchers must give to their participants to keep within their duty of care (that is, that researchers have at least some obligation to care for their research participants).

This approach to research ethics negates participant agency, particularly those participants that request they be identified in research. Furthermore, forced anonymity can be an act of disrespecting participants (Mattingly 2005, p.455–456) who may have already experienced invisibility and who are then further erased through anonymity by researchers (Scarth & Schafer 2016, p.86); for example, “in some Australian and, in particular, some Indigenous cultures, failing to name sources is both a mark of disrespect and a sign of poor research practice” (Israel, Allen & Thomson 2016, p.296).

As researchers, we must also question if presenting this approach as a vital tenet of social research can become a damaging rule-of-thumb for new researchers who might, therefore, not question the potential undermining of participant agency, and use deidentification unethically as a sweeping regulation within their research without consideration for the individual situations of their research participants. This is part of the issue created by applying a medical model of ethics assessment processes to the social sciences, in which the prevailing interpretation is that deidentification is also required within social research, whereas the reality is that specific agreements between the researcher and the research participant must be honoured.

The ethical dilemma, therefore is: can researchers ethically deidentify participants at the expense of the participants’ agency, potentially perpetuating the historical and symbolic erasure of their voices and experiences? I argue that, based on research design and data collection methods, this decision-making process is an ‘ethics in practice’ and must be approached in context, individually for each study, and for each individual participant.
As scholars, we want to minimise or eradicate harm that might come to our participants through our research. While we think “in advance about how to protect those who are brought into the study” (Tolich 2016, p.30) this must be a continual process throughout our project, in which we “work out the meaning of what constitutes ethical research and human rights in a particular context” (Breckenridge, James & Jops 2016, p.169; also see Ntseane 2009). This is important to note, because protection does not only refer to participants but also to others connected to them. For example, the use of a real name at the request of a participant may expose their family member(s) who were not part of the research.

Consequentialist approaches to ethics suggest that “an action can be considered morally right or obligatory if it will produce the greater possible balance of good over evil” (Israel, 2015: 10; also see Reynolds, 1979). This is an approach we could take to issues around deidentification; however, this also means that researchers must know what is good or bad. In studies like mine, this would mean knowing (or making an attempt, or an assumption to know) what is good or bad for my research participants. This action is infantilising, and places the researcher above the research participant by making the final call ourselves, which is to remove participant agency – if we can assume participants are autonomous during the research consent process, we must also assume that they are autonomous in making decisions with respect to their identification (Said 2016, p.212). Additionally, this action may be culturally insensitive given that Western human research ethics committees follow Western cultural guidelines, centring the dominance of Western academia.

The ethical issues I faced during my PhD research highlight why researchers cannot take a sweeping approach to deidentification in qualitative research – not even for a single study. ‘Ethics in practice’ means that each participant’s situation is analysed individually, and issues around erasure, safety, and their agency weighed against each other to reach a conclusion. I propose that if this conclusion is at odds with the preference of the participant, that it must then be taken back to the participant for further discussion. Not implementing this aspect of ‘ethics in practice’ goes against social science ethics, that we must avoid doing long-term and systemic harm, both of which come through erasure and silencing. We must also remember that “any research project has the potential to further disenfranchise vulnerable groups” (Breckenridge, James & Jops 2016, p.169), and ignoring the wishes of participants regarding their identification due to a Western model of ethics can cause further damage to these groups.

References:
Aleksievich, S., Whitby, J. & Whitby, R. 1992, Zinky Boys: Soviet voices from a forgotten war, Chatto & Windus, London.

Breckenridge, J., James, K. & Jops, P. 2016, ‘Rights, relationship and reciprocity: Ethical research practice with refugee women from Burma and New Delhi, India’, in K. Nakray, M. Alston & K. Whittenbury (eds), Social Sciences Research Ethics for a Globalizing World: Interdisciplinary and Cross-Cultural Perspectives, Routledge, New York, pp. 167–186.

Dingwall, R. 2016, ‘The social costs of ethics regulation’, in W.C. van den Hoonaard & A. Hamilton (eds),The Ethics Rupture, University of Toronto Press, Toronto, pp. 25–42.

Israel, M., Allen, G. & Thomson, C. 2016, ‘Australian research ethics governance: Plotting the demise of the adversarial culture’, in W.C. van der Hoonaard & A. Hamilton (eds),The Ethics Rupture, University of Toronto Press, Toronto, pp. 285–216.

Mattingly, C. 2005, ‘Toward a vulnerable ethics of research practice’, Health: An Inderdisciplinary Journal for the Social Study of Health, Illness and Medicine, vol. 9, no. 4, pp. 453–471.

Ntseane, P.G. 2009, ‘The ethics of the researcher-subject relationship: Experiences from the field’, in D.M. Mertens & P.E. Ginsberg (eds), The Handbook of Social Research Ethics, 1st edn, Sage, Thousand Oaks, pp. 295–307.
Ransome, P. 2013, ‘Social research and professional codes of ethics’, Ethics and Values in Social Research, Palgrave Macmillan, Basingstoke, pp. 24–53.

Said, D.G. 2016, ‘Transforming the lens of vulnerability: Human agency as an ethical consideration in research with refugees’, in K. Nakray, M. Alston & K. Whittenbury (eds),Social Sciences Research Ethics for a Globalizing World: Interdisciplinary and Cross-Cultural Perspectives, Routledge, New York, pp. 208–222.

Scarth, B. & Schafer, C. 2016, ‘Resilient Vulnerabilities: Bereaved Persons Discuss Their Experience of Participating in Thanatology Research’, in M. Tolich (ed.), Qualitative Ethics in Practice, Left Coast Press, Walnut Creek, CA, pp. 85–98.

‘Tolich, M. 2016, ‘Contemporary Ethical Dilemmas in Qualitative Research’, in M. Tolich (ed.), Qualitative Ethics in Practice, Left Coast Press, Walnut Creek, CA, pp. 25–32.

Statement of interest
No interests to declare.

Contributor
Anna Denejkina | Casual Academic and PhD  candidate in the Faculty of Arts and Social Sciences, researching intergenerational trauma transmission UTS | Staff profileAnna.Denejkina@uts.edu.au

This post may be cited as:
Denejkina A. (24 May 2018) Stop centring Western academic ethics: deidentification in social science research. Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/stop-centring-western-academic-ethics-deidentification-in-social-science-research-anna-denejkina

Can Your HREC Benefit from Coaching?0

 

Atul Gawande, an American surgeon and researcher, sparked a debate in the medical community seven years ago with his New Yorker article Personal Best, in which he explored the benefits of coaching. The best athletes in the world, he reasoned, rather than sitting on their hard-earned laurels, employ coaches as a matter of course, to scrutinise and review their game, work on imperfections and amplify their strengths. He discovered that many elite musicians do, too. So why did other types of professionals not consider the advantages of coaching as an option for improving performance? Professionals, he concluded, are educated in a discipline, and then, their learning complete, sent out into the world to get on with it.

The situation and practice in New Zealand are quite different and warrant separate discussion. Martin Tolich and Barry Smith will write a separate post on this in a future edition.
Much the same, we at AHRECS have found, are many Human Research Ethics Committees. In Australia, members are engaged for their “relevant skills and/or expertise”, as required by para 5.1.28 of the National Statement for the Ethical Conduct of Human Research, but exactly what those are is not spelled out, and a lack of volunteers sometimes means institutions will settle for a person who merely falls within the membership criteria in para 5.1.30. While a wise recruiter of HREC members will raise questions about familiarity with ethical frameworks, and group decision-making dynamics, the National Statement does not mandate the possession of skills in either of these.
.
It is to be hoped that a new HREC, and new HREC members, will receive an induction that covers both. Para 5.1.29 of the National Statement, after all, requires both the induction and the ongoing education of members. However, the most recent available NHMRC annual Report on the Activity of Human Research Ethics Committees and Certified Institutions(for 2016) indicates that fully one-third (33%) of HRECs do not provide new members with induction, and that over a quarter (27%) had provided none of their members with any training at all over the past year. Of the 77% of HRECS which reported that “at least one” member had received training during the year, it is not reported whether morethan one member has, leaving open the possibility that the figures are considerably worse. And from my own experience, some HRECs do not even provide that training themselves, but rely on diligent members to source and pay for their own.
.
It is no wonder, therefore, that many HRECs struggle to reach a common understanding of the concepts in the National Statement, become bogged down in detail, or adopt a risk-averse adversarial culturethat stifles the progress of their institution’s research. They need a fresh set of eyes and an injection of new thinking that will not detract from their existing body of experience and expertise, but will challenge and build upon it.
.
Gawande’s article provides trenchant examples of the benefits he has experienced as a surgeon from introducing coaching to his practice – beginning, simply, with engaging another experienced surgeon to observe and comment on his surgeries. He recently revisited the issue in his December 2017 TED Talk “Want to get great at something? Get a coach”. In this presentation Gawande shows compelling instances of the improvements coaching has brought to teams of health practitioners, not only in terms of their expertise but in their group culture and strategic problem-solving skills.
.
There are a number of options for institutions seeking to support their HRECs through coaching.  Mainstream executive coaches may offer assistance in the areas of chairing and group decision-making.  More specialist research ethics expertise may be sourced from the HRECs of other institutions, or from previous Chairs.  The AHRECS team is committed to life-long learning and improvement, and we, too, offer practical, cost-effective coaching to facilitate real improvement for committees at any level of sophistication. Whatever solution you choose, significant value can be gained by having impartial, experienced experts observe your HREC in action, make practical and nuanced suggestions for improvement, and identify obstacles to best practice.  As a bonus, HRECs can also use coaching to meet the requirements of the National Statement for the continuing education of members.
.
The world’s best professionals recognise the advantages that coaching can bring. HRECs can, and should, seek those benefits too.
.

Contributor
Sarah Byrne, AHRECS senior consultant | Sarah’s AHRECS profilesarah.byrne@ahrecs.com

.
This post may be cited as:
Byrne S. (22 May 2018) Can Your HREC Benefit from Coaching?. Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/can-your-hrec-benefit-from-coaching

What’s been going on at AHRECS0

 

We’re thrilled by how the AHRECS team has been growing and the expertise Sarah, Barry and Nik have brought to the team and the new services we can now provide. We hope in the coming weeks to announce some more additions to the team. The central ethos of resourcing reflective practice remains unchanged and we still strive to be a voice for constructive change.

You may have noticed a few refinements of the AHRECS web site have been happening quietly:

  • The Resource Library ahrecs.com/resources: the search functionality has improved (but still needs some work), and there’s now related materials with a link to other items in the Resource Library.
  • The blog pages ahrecs.com/blog: a form to subscribe to the Research Ethics Monthly; pdf copies of earlier editions, and within stories there will be links to related blog items and related Resource Library items.
  • The Our Services pages https://ahrecs.com/our-services  describes our various service.
  • The Research Ethics Adviser Platform https://ahrecs.com/about-this-service can now be used to obtain expert and independent advice on a research ethics review application prior to its submission to a research ethics committee. A quick advisory costs AUD50 and can be returned in less than 14 days.
  • The AHRECS home page has links to the COPE site (AHRECS is an associate member of COPE) and Retraction Watch (we’re proud to support their work).

The Research Ethics Monthly and Resource Library will remain free, but work is underway to:

  • Provide downloadable vignettes and discussion activities.
  • Short articles reflecting on recent news in the human research ethics/research integrity spheres.
  • An AHRECS app for smartphones.
  • A human research ethics game.
  • A research integrity game.
  • An online Q&A clinic.
  • Hosted webinars
  • And much more.

We hope that strikes you as useful, because we’re excited to be working on them.

On the Problem of “Worldlessness”. Do The Declaration of Helsinki and the Council for International Organizations of Medical Science Guidelines Protect the Stateless in the Research Context?0

 

Associate Professor Deborah Zion
Chair, Victoria University, HREC.
deborah.zion@vu.edu.au

Can these bones live? Ezekiel, 37:3.

The Declaration of Helsinki has considerable guidance on working with vulnerable research participants, and vulnerability in research is the focus of the Council for International Organizations of Medical Science (CIOMS) guidance document. Both of these documents have undergone recent revisions[1]. However, a broader question remains about these and other national guidelines; namely, how can we translate them into practice? When conducting research with one of the world’s most vulnerable populations, namely those seeking asylum, guidelines must be operationalised with creativity so that the research imperative can be fulfilled.

For Hannah Arendt, the refugee was the archetypical figure that revealed the contradiction between universal rights and national sovereignty. For her it was the loss of rights which was, and remains, the defining attribute of the refugee. She insists that the fundamental deprivation of human rights is manifested first and above all in the deprivation of a place in the world.

In Australia the vulnerability experienced by statelessness is further exacerbated by such persons being incarcerated in offshore detention centres on Nauru and in Papua New Guinea, shut away from the oversight of human rights institutions. Nonetheless, there is an imperative to conduct research about this population, in order to record the conditions of detention and to bear witness, as an act of solidarity, the egregious human rights violations suffered by those detained.

What then do the guidelines say about vulnerable populations, and how can we translate this into research with refugees and asylum seekers?

Clause 19 of The Declaration of Helsinki, states that

Some groups and individuals are particularly vulnerable and may have an increased likelihood of being wronged or of incurring additional harm. All vulnerable groups and individuals should receive specifically considered protection[2].

CIOMS Guideline 15 and the accompanying commentary state that

When vulnerable individuals and groups are considered for recruitment in research, researchers and research ethics committees must ensure that specific protections are in place to safeguard the rights and welfare of these individuals and groups in the conduct of the research.

The account of vulnerability in this Guideline seeks to avoid considering members of entire classes of individuals as vulnerable. However, it is useful to look at the specific characteristics that may render individuals vulnerable, as this can aid in identifying the special protections needed for persons who may have an increased likelihood of being wronged or of incurring additional harm as participants in research. Different characteristics may also co-exist, making some individuals more vulnerable than others. This is highly dependent on the context. For example, persons who are illiterate, marginalized by virtue of their social status or behaviour, or living in an authoritarian environment, may have multiple factors that make them vulnerable [3].

In Australia, The National Statement on Ethical Conduct in Human Research[4] specifically mentions refugees in Chapter 4.3, as persons likely to be in dependent and unequal relationships, thus indicating the complexity inherent in working with disempowered populations.

It is the case that asylum seekers have multiple layers of vulnerability, based upon rights’ deprivation, age, previous experience of torture, sexual violence, gender and family separation. These guidelines set some broad perimeters that are certainly worthy of consideration and, as a framework, they are indeed useful. There is, however, no detail about how we might translate from theory to practice[5].

In particular, they do not help us resolve the conflict between on the one hand obtaining informed consent from those detained, where access is limited, conditions constrain autonomy, and we cannot check for understanding and competence, and on the other the imperative to conduct research. CIOMS guidelines 9 and 10 give explicit direction concerning informed consent and, consistent with many other guidelines, prohibit research without consent unless the benefit is very great and the potential risk very small. On this basis, direct research involving asylum seekers in detention cannot be carried out.

More particularly, Calvin Ho suggests the guidelines do not go far enough in addressing situational and structural contributions to vulnerability[6]. These leave researchers working in situations where there is great structural as well as personal vulnerability for participants to find creative ways to uncover, record and analyse injustices that might otherwise be hidden from public view, and from mechanisms of accountability. We encourage researchers to find ways of creating and utilising all forms of data, such as published reports, newspaper articles, and interviews with those who have knowledge but are less vulnerable, without ever compromising the importance of informed consent.

How should both researchers and those engaged in ethics review think about these complex issues? The first issue relates to informed consent, especially when asylum seekers are incarcerated, and speaks to whether or not powerless people, even when fully competent, can give informed consent. We also encourage researchers to find a way to fulfil research imperatives that promote justice for highly vulnerable populations wherever possible, through gathering data in ways that do not compromise those who are already highly vulnerable[7].

For our own part, over 14 years we collected a considerable number of interviews from healthcare providers, including rich descriptive accounts of detention life and the way in which the right to health was, and continues to be undermined. These were matched with every other source available. We have built up a very complex picture of life in onshore detention as well as on Manus Island and Nauru. While things continue to deteriorate, it is not possible for people to pretend these events did not take place.

There were two other important outcomes. The first was that healthcare providers could utilise our work when making decisions about whether to work in asylum seeker detention and, if so, the ethical implications of their choice. The second was that those who spoke to us became witnesses to the suffering they had seen. Their participation therefore became an act of solidarity for those who could not speak for themselves. As David Robertson et al. state:

[Witnessing] entails being with people who are victims of injustice or violence and thereby showing that they have not been abandoned… it entails testifying to the outside world about the injustice or violence observed, and advocating that the world community bring about change. Bearing witness can thus facilitate and fuel human solidarity in the face of tragedy, and contribute to focussing international attention.[8]

Notes

[1] CIOMS, International ethical guidelines for health-related research involving humans, 2016. https://cioms.ch/wp-content/uploads/2017/01/WEB-CIOMS-EthicalGuidelines.pdf

World Medical Association, Declaration of Helsinki – Ethical Principles for Medical Research Involving Human Subjects,2018.https://www.wma.net/policies-post/wma-declaration-of-helsinki-ethical-principles-for-medical-research-involving-human-subjects/\

[2]  World Medical Association, ibid.

 

[3] CIOMS, ibid.

 

[4] NHMRC, The National Statement on Ethical Conduct in Human Research, 2007. Updated 2015. https://www.nhmrc.gov.au/_files_nhmrc/publications/attachments/e72_national_statement_may_2015_150514_a.pdf

 

[5] Such guidance is provided elsewhere, for example by the European Commission in its Guidance Note on Research on refugees, asylum seekers and migrants. See http://ec.europa.eu/research/participants/data/ref/h2020/other/hi/guide_research-refugees-migrants_en.pdf

 

[6] Calvin Ho, CIOMS guidelines remain conservative about vulnerability and social justice, Indian Journal of Medical Ethics, June, 2017.

 

[7] Such strategies might be included in submissions to the NHMRC’s consultation on the National Statement Part 4. See https://ahrecs.com/resources/nhmrc-invitation-to-provide-feedback-to-inform-a-review-of-section-4-of-the-national-statement-on-ethical-conduct-in-human-research

 

[8] David Robertson et al. What kind of evidence do we need to justify humanitarian medical aid? The Lancet, 360, no.9329, 2002, pp.330- 333. DOI: https://doi.org/10.1016/S0140-6736(02)09558-2

 

Disclosure of interest
I declare I have no conflict of interest.

Contributor
See above

This post may be cited as:
Zion D. (30 March 2018) On the Problem of “Wordlessness”. Do The Declaration of Helsinki and the Council for International Organizations of Medical Science Guidelines Protect the Stateless in the Research Context?. Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/on-the-problem-of-wordlessness-do-the-declaration-of-helsinki-and-the-council-for-international-organizations-of-medical-science-guidelines-protect-the-stateless-in-the-research-con

Page 1 of 1012345...10...Last »