Who decides whom to interview? Sexual violence research in refugee torture survivors – ethical issues of gatekeeping

Talk Code: 
2B.4
Presenter: 
Roghieh Dehghan Zaklaki
Co-authors: 
None
Author institutions: 
Institute for Global Health, Univeristy College London

Problem

This presentation builds on my ongoing research into the mental health impacts of torture, a project that almost came to a halt because of the ethical concerns of gatekeepers. Therefore, my aim is to discuss the ethical issues of healthcare professionals’ gatekeeping in research involving tortured refugees.

Approach

I will attempt to demonstrate why feminist ethics of justice and care are best suited for research involving traumatised refugees. To start with, I will provide an outline of the principle-based and utilitarian frameworks that usually regulate the relationship between the researcher and the human subject and point out that while the codes of bioethics bear relevance, they fail to capture the complexity and plurality of the ethics of researching refugee torture survivors. I will pursue two main lines of argument to illustrate this point, one based on the particular vulnerabilities of this group that require specific ethical considerations and the other related to the contradictory issues of care and power as it pertains to the role of gatekeepers.

Findings

As for refugees as a specific cohort, I will argue that non-maleficence is not enough when working with disadvantaged groups. This is because research in general, and minority research in particular, is not value-free (Fisher, 1999). Research on tortured refugees is political for three reasons: first, torture by definition is political; second, the legal status of asylum seekers in a host country depend on their refugee victim identity; third, they constitute an underprivileged group and thereby can be subjected to racism and “group stigmatisation”. These reasons highlight the importance of ethics of justice as they align with relational ethics, care and responsibility for the subject of research. Put differently, since tortured refugees experience a deep sense of helplessness and mistrust, gatekeeping can be viewed as a ‘justice of care’ which holds the professionals involved to the moral duty of being in a caring relationship. This is core to relational ethics because care is based on moral principles rather than a sense of charity. It is the care for those who are vulnerable, vulnerability as it arises in specific circumstances and depends on various variables. In this sense, gatekeeping is meant to eliminate harm.On the other hand, gatekeeping carries the assumption that the power of the researcher is harmful whereas the power of the caring professional is benign. What’s more, by excluding this underprivileged group from research, the gatekeeper is governing knowledge production by maintaining the status quo and hindering the collection of data that could potentially create effective health interventions and alleviate suffering.

Consequences

Therefore, I contend that a relational ethics of care and justice enables the healthcare professionals/gatekeepers to meet their ethical duties without compromising the agency of potential research participants.

Submitted by: 
Roghieh Dehghan Zaklaki
Funding acknowledgement: 
I would like to thank NIHR for funding my current project. In addition, I am grateful to Dr James Wilson, senior lecturer at the Department of Philosophy (UCL) for his engaging teaching style. The current presentation is based on an essay submitted to him as part of an MA in Philosophy, Politics and Economics of Health. There is a paper that has resulted from this work and is currently prepared for publication but has not been submitted yet.