The interdependence of health and human rights has substantial conceptual and practical implications, as health and human rights are complementary approaches for defining and advancing human well-being (1). Research should be fully meet all of the ethical and human rights standards set in the international guidelines. However, as explained by Amon and colleagues, health and human rights investigations raise difficult ethical and methodological challenges (2).
First, the methodology and intent of human rights research has not been fully considered in existing standards and guidelines on the ethical conduct of research. Also, RECs, who have traditionally been orientated to biomedical and epidemiologic research, are inexperienced in the review of human rights research. Hence, they might have little experience with the evaluation of risks faced by individuals who have been subject to human rights abuses and with the mitigation of risk that might occur in a research study. Risks of such research may result from breaches of confidentiality and may also surface from the publication of research results (e.g., reports, legal processes, and media coverage).
Second, in many countries local RECs are under the charge of a national committee, who is in charge of creating policies, providing oversight, and, in some cases, performing an additional, final review. Such RECs may have difficulty in acting independently from the national committees, who might have an interest in limiting the scope of or restricting investigations into human rights abuses. Indeed, investigations in human rights abuses might also lead to results regarding the role and complicity of individuals in the national government and involve the nature of government laws and policies. As stated by the authors, “The use of RECs to limit health and human rights research for political, cultural, or other considerations is a misuse of the legitimate functions of RECs”.
Finally, investigations into human rights abuses might not fall under the purview of RECs, as such activities might not be considered research, as “documentation of particular cases of human rights abuse, or human rights protections in particular situations” might not be considered “generalizable” data.
When RECs are unable to perform an independent review of research or where research on human rights or criminalized or marginalized populations is expressly prohibited by the national government, the authors mention two distinct and complementary strategies: 1) community-based review and 2) the development of strong ethical operating principles that c an help protect investigators and participants in health-related human rights research.
However, increasing attention to human rights as a determinant of health will result in increasing requests to RECs to review research that involve human rights abuses. Hence, evaluation and mitigation of risks in human rights investigations can be obtained through a strong local, independent RECs trained in human rights.
References:
1. Jonathan M. Mann, Lawrence Gostin, Sofia Gruskin, Troyen Brennan, Zita Lazzarini and Harvey V. Fineberg (1994): Health and Human Rights,Vol. 1, No. 1, pp.6-23, Available at: http://www.jstor.org/stable/4065260
2. Amon JJ, Baral SD, Beyrer C, Kass N (2012): Human Rights Research and Ethics Review:
Protecting Individuals or Protecting the State? PloS Med 9(10): e1001325. doi:10.1371/journal.pmed.1001325
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