Associate Professor Deborah Zion
Chair, Victoria University, HREC.
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. 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.
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 .
In Australia, The National Statement on Ethical Conduct in Human Research 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.
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. 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.
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.
 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/\
 World Medical Association, ibid.
 CIOMS, ibid.
 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
 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
 Calvin Ho, CIOMS guidelines remain conservative about vulnerability and social justice, Indian Journal of Medical Ethics, June, 2017.
 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
 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.
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