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The complex art of benefit-sharing0

 

In community-based participatory action programs (programs which have a research component but which are also focussed on community development and empowerment), it might be possible to identify a link between a research project and a benefit to the participating community. Over and above conducting the study, in research on domestic violence, studies have provided emotional and practical support for victims, offering information about, and organizing access to, formal and informal services, providing feedback to the study community and relevant agencies, and supporting or engaging in advocacy on behalf of abused (Usdin et al. 2000). Work on victims of state violence has also advocated for broader political change (Stanley 2012).

However, in other circumstances it may be far more likely that participants may contribute to research but gain very little direct or even no benefit from it. The lack of reciprocity may be particularly problematic if participants are drawn from vulnerable groups.

For example, members of poorer communities have a right to feel aggrieved if research undertaken in their communities is only likely to be of benefit to wealthier societies. This is most obviously the case where multinational pharmaceutical corporations trial drugs or procedures in the Global South that are in the end likely to be priced out of the reach of participant communities or which were never relevant to their needs. Not surprisingly, therefore, the concept of benefit-sharing has been most widely developed in discussions of health and genetic research.

In response, international agreements and statements related to biomedical research such as the Declaration of Helsinki (from 2000 onwards) and non-human genetic and bioprospecting research such as the legally-binding Convention on Biological Diversity (1992), formalised in the Nagoya Protocol (Convention on Biological Diversity, 2010), instituted obligations relating to benefit-sharing for projects that fell within their jurisdiction. These agreements recognised that:

Those who contribute to developments in science and technology ought to share in the benefits, so if those benefits are not shared with the contributors to scientific advancement, that advancement is exploitative. (Arnason and Schroeder, 2013, p. 21)

As a result, the Nagoya Protocol pointed to the principle that research projects should offer benefits to participants. Non-financial benefits might include: sharing research results; collaboration, cooperation and contribution in research and development programmes, education and training; institutional capacity-building; contributions to the local economy; research directed towards priority needs of the participating community; institutional and professional relationships that can arise from an access and benefit-sharing agreement and subsequent collaborative activities; livelihood security benefits; and, social recognition. It is easy to imagine how such benefits, in the context of biomedical research, can be applied to social research; or, at least, it would be if social researchers were funded at the same level as biomedical researchers.

Unfortunately, the art of benefit-sharing has proved to be complex.

First, it might not be straightforward to identify what constitutes a benefit, particularly at the beginning of a researcher’s engagement with a new community. In her recent critique of transnational Feminist researchers, Rajan (2018) portrayed some external attempts at intervening in support of women’s rights in the Global South as ‘unfairly patronizing, or alternatively… ill-advised and characterized by a lack of sufficient knowledge of local context and concerns’ (p.271).

Second, it may not always be easy to work out what a particular community might regard as a fair way of sharing benefits. Even those projects that have sought to implement formal benefit-sharing arrangements have struggled to achieve a just and equitable distribution of benefits. For example, there is evidence that women have been marginalized in the negotiation and implementation of benefit-sharing arrangements, despite (and indeed because of) their additional susceptibility to exploitation within vulnerable communities. In addition, it is possible that some benefits aimed at individual participants might undermine commitments to respond to injustice at a macro-level and might even cause intra-community conflict. For instance, providing a participant family with additional food in a village where food is scarce may cause resentment among neighbours.

Third, some disciplines are less likely than others to generate tangible benefits and, even if they can, researchers may not be able to assure that the intended benefits of a research project will flow to participants. They may be particularly powerless in the face of powerful institutions whose job it is to restrict the freedom of participants. Zion et al. (2010), for example, argued that researchers seeking to work on projects on self-harm by asylum seekers funded by the Australian Commonwealth government were likely to be compromised. As asylum seekers are subjected to indefinite mandatory detention in Australia, Zion and her colleagues concluded that even projects aimed at improving the mental wellbeing of detainees risk legitimizing a detention regime that inevitably breached human rights.

Finally, acceptance of the importance of benefit-sharing arrangements is not universal. In 2008, the United States effectively opted out of the provisions of the Declaration of Helsinki that relate to ensuring that research participants must be allowed access to tested clinical interventions that were found to be successful and that research in low and lower middle-income countries must be designed to benefit local communities. Even before that time, there was little evidence that Institutional Review Boards in the US were taking the requirement seriously (Macklin, 2004).

So, benefit-sharing offers a way of directing both the outcomes and the process of research towards the pursuit of global and social justice. Unfortunately, a broader range of disciplines need to do more to develop and share strategies of benefit-sharing before we can have confidence that it has found a place in across our research programs.

Acknowledgements:

This article further develops an argument that will appear in Israel, M. & Fozdar, F. (in press) The ethics of the study of ‘Social Problems’ . In Treviño, J. & Marvasti, A. (eds) Researching Social Problems. New York: Routledge.

Bibliography

Arnason, G. and Schroeder, D. (2013) Exploring Central Philosophical Concepts in Benefit Sharing: Vulnerability, Exploitation and Undue Inducement. In Schroeder, D. and Lucas, J.C. (eds.) Benefit Sharing: From Biodiversity to Human Genetics. Springer. pp.9-31

Convention on Biological Diversity (2010) Nagoya Protocol on Access to Genetic Resources and the Fair and Equitable Sharing of Benefits Arising from their Utilization to the Convention on Biological Diversity. http://www.cbd.int/abs/doc/protocol/nagoya-protocol-en.pdf

Macklin, R. (2004) Double Standards in Medical Research in Developing Countries. Cambridge: Cambridge University Press.

Rajan, H. (2018) ‘The Ethics of Transnational Feminist Research and Activism: An Argument for a More Comprehensive View’, Signs: Journal of Women in Culture and Society 43(2): 269-300.

Stanley, E. (2012) ‘Interviewing Victims of State Violence’ in Gadd, D., Karstedt, S. and Messner, S.F. (eds) The Sage Handbook of Criminological Research Methods. Sage: London. DOI: http://dx.doi.org/10.4135/9781446268285.n15

Usdin, S., Christfides, N., Malepe, L. and Aadielah, M. (2000) ‘The value of advocacy in promoting social change: implementing the new Domestic Violence Act in South Africa’, Reproductive Health Matters, 8(16): 55–65.

Zion, D., Briskman L. and Loff, B. (2010) ‘Returning to History: The Ethics of Researching Asylum Seeker Health in Australia’, The American Journal of Bioethics, 10(2): 48-56. DOI: 10.1080/15265160903469310

Contributor
Prof. Mark Israel
Senior consultant AHRECS – AHRECS Profile | mark.israel@ahrecs.com

This post may be cited as:
Israel M. (24 July 2018) The complex art of benefit-sharing. Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/the-complex-art-of-benefit-sharing

We invite debate on issues raised by items we publish. However, we will only publish debate about the issues that the items raise and expect that all contributors model ethical and respectful practice.

Australian Code 2018: What institutions should do next1

 

Gary Allen, Mark Israel and Colin Thomson

At first glance, there is much to be pleased about the new version of the Australian Code that was released on 14th June. A short, clear document that is based upon principles and an overt focus on research culture is a positive move away from the tight rules that threatened researchers and research offices alike for deviation from standards that might not be appropriate or even workable in all contexts.

The 2007 Code was rightly criticized on several grounds. First, weighing a system down with detailed rules burdened the vast majority with unneeded compliance for the recklessness and shady intentions of a very small minority. Second, there was reason to suspect the detailed rules did not stop the ‘bad apples’. Third, those detailed rules probably did not inspire early career researchers to engage with research integrity and embrace and embed better practice into their research activity. Finally, the Code did little to create an overall system able to undertake continuous improvement.

But, before we start to celebrate any improvements, we need to work through what has changed and what institutions and researchers need to do about it. And, then, maybe a quiet celebration might be in order.

Researchers have some fairly basic needs when it comes to research integrity. They need to know what they should do: first, as researchers and research supervisors in order to engage in good practice; second, if they encounter poor practice by another researcher; and, third, if other people complain about their practices.

The 2007 Australian Code offered some help with each of these. In some cases, this ‘help’ was structured as a requirement and over time was found wanting. The 2018 version appreciated that these questions might be basic but that the answers were often complex. The second and third questions are partly answered by the accompanying Guide to Managing and Investigating Potential Breaches of the Code (the Investigation Guide) and we’ll return to this. The answer to the first question is brief.

The Code begins to address responsibilities around research integrity through a set of eight principles that apply to researchers as well as their institutions: honesty; rigour; transparency; fairness; respect; recognition of the rights of Indigenous peoples to be engaged in research; accountability, and promotion of responsible research practices. Explicit recognition of the need to respect the rights of Aboriginal and Torres Strait Islander peoples did not appear in the 2007 version. There are 13 responsibilities specific to institutions. There are 16 responsibilities, specific to researchers, that relate to compliance with legal and ethical responsibilities, require researchers to ensure that they support a responsible culture of research, undertake appropriate training, provide mentoring, use appropriate methodology and reach conclusions that are justified by the results, retain records, disseminate findings, disclose and manage of conflicts of interest, acknowledge research contributions appropriately, participate in peer review and report breaches of research integrity.

In only a few cases might a researcher read these parts of the Code and conclude that the requirements are inappropriate. It would be a little like disagreeing with the Singapore Statement (the one on research integrity, not the recent Trump-Kim output). Mostly, the use of words like ‘appropriate’ within the Code (it appears three times in the Principles, twice in the responsibilities of institutions and five times in responsibilities of researchers) limit the potential for particular responsibilities to be over-generalised from one discipline and inappropriately transferred to others.

There are some exceptions, and some researchers may find it difficult to ‘disseminate research findings responsibly, accurately and broadly’, particularly if they are subject to commercial-in-confidence restrictions or public sector limitations, and we know that there are significant pressures on researchers to shape the list of authors in ways that may have little to do with ‘substantial contribution’.

For researchers, the Code becomes problematic if they go to it seeking advice on how they ought to behave in particular contexts. The answers, whether they were good or bad in the 2007 Code, are no longer there. So, a researcher seeking to discover how to identify and manage a conflict of interest or what criteria ought to determine authorship will need to look elsewhere. And, institutions will need to broker access to this information either by developing it themselves or by pointing to good sectoral advice from professional associations, international bodies such as the Committee for Publication Ethics, or the Guides that the NHMRC has indicated that it will publish.

We are told that the Australian Code Better Practice Guides Working Group will produce guides on authorship and data management towards the end of 2018 (so hopefully at least six months before the deadline of 1 July 2019 for institutions to implement the updated Australian Code). However, we do not know which other guides will be produced, who will contribute to their development nor, in the end, how useful they will be in informing researcher practice. We would hope that the Working Group is well progressed with the further suite if it is to be able to collect feedback and respond to that before that deadline.

There are at least nine areas where attention will be required. We need:

1. A national standard data retention period for research data and materials.

2. Specified requirements about data storage, security, confidentiality and privacy.

3. Specified requirements about the supervision and mentoring of research trainees.

4. A national standard on publication ethics, including such matters as republication of a research output.

5. National criteria to inform whether a contributor to a research project could or should not be listed as an author of a research output.

6. Other national standards on authorship matters.

7. Specified requirements about a conflicts of interest policy.

8. Prompts for research collaborations between institutions.

For each of those policy areas the following matters should be considered:

1. Do our researchers need more than the principle that appears in the 2018 Australian Code?

2. If yes, is there existing material upon which an institution’s guidance material can be based?

3. Who will write, consider and endorse the guidance material at a national or institutional level?

Many institutions will conclude it is prudent to wait until late 2018 to see whether the next two good practice guides are released and discover how much they cover. Even if they do so, institutions will also need to transform these materials into resources that can be used in teaching and learning at the levels of the discipline and do so in a way that builds the commitment to responsible conduct and the ethical imaginations of researchers rather than testing them on their knowledge of compliance matters.

Managing and Investigating Potential Breaches

The Code is accompanied by a Guide to Managing and Investigating Potential Breaches of the Code (the Investigation Guide). The main function of this Guide is to provide a model process for managing and investigating complaints or concerns about research conduct. However, before examining how to adopt that model, institutions need to make several important preliminary decisions.

First, to be consistent with the Code, the Guide states that institutions should promote a culture that fosters and values responsible conduct of research generally and develop, disseminate, implement and review institutional practices that promote adherence to the Code. Both of these will necessitate the identification of existing structures and processes and a thorough assessment to determine any changes that are needed to ensure that they fulfil these responsibilities.

This means that institutions must assess how their processes conform to the principles of procedural fairness and the listed characteristics of such processes. The procedural fairness principles are described as:

  • the hearing rule – the opportunity to be heard
  • the rule against bias – decisionmakers have no personal bias in the outcome
  • ‘the evidence rule – that decisions are based on evidence.

The characteristics require that an institution’s processes are: proportional; fair; impartial; timely; transparent, and confidential. A thorough review, and, where, necessary, revision of current practices will be necessary to show conformity to the Guide.

Second, when planning how to adopt the model, institutions need to consider the legal context as the Guide notes that enterprise bargaining agreements and student disciplinary processes may prevail over the Guide.

Third, the model depends on the identification of six key personnel with distinct functions. Some care needs to be taken to match the designated roles with the appropriate personnel, even if their titles differ from those in the model, in an institution’s research management structure. The six personnel are:

  • a responsible executive officer, who has final responsibility for receiving report and deciding on actions;
  • a designated officer, appointed to receive complaints and oversee their management;
  • an assessment officer or officers, who conduct preliminary assessments of complaints;
  • research integrity advisers, who have knowledge of, and promote adherence to, the Code and offer advice to those with concerns or complaints;
  • research integrity office, staff who are responsible for managing research integrity;
  • review officer, who has responsibility to receive requests for procedural review of an investigation.]

Last, institutions must decide whether to use the term ‘research misconduct’ at all and, if so, what meaning to give to it. Some guidance is offered in a recommended definition of the term but, as noted above, this will need to be considered in the legal contexts of EBAs and student disciplinary arrangements.

Conclusion

The update to the Code provides a welcome opportunity to reflect on a range of key matters to promote responsible research. The use of principles and responsibilities and the style of the document offers a great deal of flexibility that permits institutions to develop their own thoughtful arrangements. However, this freedom and flexibility comes with a reciprocal obligation on institutions to establish arrangements that are in the public interest rather than ‘just’ complying with a detailed rule. We have traded inflexibility for uncertainty; what comes next is up to all of us.

Click here to read about the AHRECS Australian Code 2018 services

The Contributors
Gary Allen, Mark Israel and Colin Thomson – senior consultants AHRECS

This post may be cited as:
Allen G., Israel M. and Thomson C. (21 June 2018) Australian Code 2018: What institutions should do next. Research Ethics Monthly. Retrieved from: https://ahrecs.com/research-integrity/australian-code-2018-what-institutions-should-do-next

We invite debate on issues raised by items we publish. However, we will only publish debate about the issues that the items raise and expect that all contributors model ethical and respectful practice.

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

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

 

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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

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