Although the ethics of social science research has not enjoyed as much scholarly attention as the ethics of biomedical research, social scientists continue to debate the relevance of research ethics and ethics review to social science research. Like social scientists, biomedical scientists have also objected to ethical review of biomedical research, and much has been gained from the ensuing debates. This chapter reviews much of this recent debate, and proposes the application of a framework developed by Emanuel, Wendler, and Grady (2008). We argue, however, that social scientists are generally inadequately trained in research ethics and may still espouse a dangerous view, common among behavioral scientists in the 1950s, that ethical concerns reflect a kind of methodological or scientific naiveté. We provide grounds for arguing, further, that social science research, with a few clear exceptions, should be rigorously ethically reviewed, and that research ethics committees have an obligation to be competent in the appropriate review of social science research, including qualitative research. Although the chapter refers largely to social science research, we include psychological research as a major domain of social science research.
Obtaining voluntary informed consent for research participation is an ethical imperative, yet there appears to be little consensus regarding what constitutes a voluntary consent decision. An instrument to assess influences on participants' consent decision and perceived voluntariness was developed and piloted in two South African HIV clinical trials. The pilot study found high levels of perceived voluntariness. The feeling of having no choice but to participate was significantly associated with lower perceived voluntariness. Overall the data suggest that it is possible to obtain voluntary and valid consent for research participants in ethically complex HIV clinical trials in a developing country context.
BackgroundAfrica continues to bear a disproportionate share of the global HIV/AIDS, tuberculosis (TB) and malaria burden. The development and distribution of safe, effective and affordable vaccines is critical to reduce these epidemics. However, conducting HIV/AIDS, TB, and/or malaria vaccine trials simultaneously in developing countries, or in populations affected by all three diseases, is likely to result in numerous ethical challenges.MethodsIn order to explore convergent ethical issues in HIV/AIDS, TB and malaria vaccine trials in Africa, the Ethics, Law and Human Rights Collaborating Centre of the WHO/UNAIDS African AIDS Vaccine Programme hosted a consultation on the Convergent Ethical Issues in HIV/AIDS, TB and Malaria Vaccine Trials in Africa in Durban, South Africa on the 10-11 February 2009.ResultsKey cross cutting ethical issues were prioritized during the consultation as community engagement; ancillary care obligations; care and treatment; informed consent; and resource sharing.ConclusionThe consultation revealed that while there have been few attempts to find convergence on ethical issues between HIV/AIDS, TB and malaria vaccine trial fields to date, there is much common ground and scope for convergence work between stakeholders in the three fields.
We report the findings of a preliminary study of social science researchers' experiences of ethics review from a developing country perspective. Social science researchers' experiences of ethics review were coded as negative (42.6%), positive (21.3%), or mixed (36.2%). Ethics review was primarily experienced as negative for pragmatic reasons such as slow turnaround time, inadequate review and problems with the centralization of review. Our finding that South African researchers experience the same problems and frustrations with RECs as developed country researchers affirms that South Africa's problems with ethics review are not due to it being a less developed system, but to general review practices as they arise naturally in institutions. Developing countries thus have a unique opportunity to learn from the reported dissatisfactions and mistakes of developed countries, to avoid procedures that have hindered ethics review of much social science research in developed countries, and to fashion their own review procedures in ways that are more appropriate to key ethical issues arising in social science research and local conditions and resources.
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