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Ethics and the ethnography of medical research in Africa

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  • Molyneux, Sassy
  • Geissler, P. Wenzel

Abstract

The ethics of medical research have grown as an area of expertise and debate in recent years, with two broad approaches emerging in relation to transnational research: (1) the refinement of guidelines and strengthening of review, processes primarily to protect the right of individual research participants and strengthen interpersonal relations at the micro-level; and (2) considering more centrally, as crucial ethical concerns, the wider interests of whole populations, the functioning of research institutions, the processes of collaboration, and the ethics of inequitable international relations. We see the two areas of debate and action as complementary, and believe that social science conducted in and around transnational medical research environments can bring these two perspectives together in a more 'situated ethics' of research. To explore this idea for medical research in Africa, we organized a conference in December 2005 in Kilifi, Kenya. In this introduction we outline the two emerging approaches to medical ethics, summarise each of seven papers selected from the conference for inclusion in this special issue on ethics and ethnography, and finally highlight two areas of lively debate at the conference itself: the appropriateness and value of ethics guidelines and review boards for medical research; and the ethical review of social science research. Together, the papers and debates point to the importance of focusing on the ethics of relationships and on justice in both biomedicine and social science research, and on giving greater voice and visibility to the field staff who often play a crucial and under-supported role in 'doing ethics' in the field. They also point to the potential value of social science research on the range of relationships operating at different levels and time scales in medical research, including those surrounding community engagement activities, and the role and functioning of ethics review boards. We conclude by highlighting the ethical priority of capacity strengthening in medical research, social science and research ethics in Africa to ensure that local and national priorities and concerns are considered at both the micro and macro levels.

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  • Molyneux, Sassy & Geissler, P. Wenzel, 2008. "Ethics and the ethnography of medical research in Africa," Social Science & Medicine, Elsevier, vol. 67(5), pages 685-695, September.
    • Handle: RePEc:eee:socmed:v:67:y:2008:i:5:p:685-695
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    References listed on IDEAS

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    2. Marsh, Vicki & Kamuya, Dorcas & Rowa, Yvonne & Gikonyo, Caroline & Molyneux, Sassy, 2008. "Beginning community engagement at a busy biomedical research programme: Experiences from the KEMRI CGMRC-Wellcome Trust Research Programme, Kilifi, Kenya," Social Science & Medicine, Elsevier, vol. 67(5), pages 721-733, September.
    3. Molyneux, C.S. & Wassenaar, D.R. & Peshu, N. & Marsh, K., 2005. "'Even if they ask you to stand by a tree all day, you will have to do it (laughter)...!': Community voices on the notion and practice of informed consent for biomedical research in developing countrie," Social Science & Medicine, Elsevier, vol. 61(2), pages 443-454, July.
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    8. Geissler, P. Wenzel & Kelly, Ann & Imoukhuede, Babatunde & Pool, Robert, 2008. "'He is now like a brother, I can even give him some blood' - Relational ethics and material exchanges in a malaria vaccine 'trial community' in The Gambia," Social Science & Medicine, Elsevier, vol. 67(5), pages 696-707, September.
    9. Fairhead, James & Leach, Melissa & Small, Mary, 2006. "Where techno-science meets poverty: Medical research and the economy of blood in The Gambia, West Africa," Social Science & Medicine, Elsevier, vol. 63(4), pages 1109-1120, August.
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    11. Theobald, Sally & Nhlema-Simwaka, Bertha, 2008. "The research, policy and practice interface: Reflections on using applied social research to promote equity in health in Malawi," Social Science & Medicine, Elsevier, vol. 67(5), pages 760-770, September.
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    13. Lairumbi, Geoffrey Mbaabu & Molyneux, Sassy & Snow, Robert W. & Marsh, Kevin & Peshu, Norbert & English, Mike, 2008. "Promoting the social value of research in Kenya: Examining the practical aspects of collaborative partnerships using an ethical framework," Social Science & Medicine, Elsevier, vol. 67(5), pages 734-747, September.
    14. Jentsch, Birgit & Pilley, Catherine, 2003. "Research relationships between the South and the North: Cinderella and the ugly sisters?," Social Science & Medicine, Elsevier, vol. 57(10), pages 1957-1967, November.
    15. Gikonyo, Caroline & Bejon, Philip & Marsh, Vicki & Molyneux, Sassy, 2008. "Taking social relationships seriously: Lessons learned from the informed consent practices of a vaccine trial on the Kenyan Coast," Social Science & Medicine, Elsevier, vol. 67(5), pages 708-720, September.
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    2. Tengbeh, Angus Fayia & Enria, Luisa & Smout, Elizabeth & Mooney, Thomas & Callaghan, Mike & Ishola, David & Leigh, Bailah & Watson-Jones, Deborah & Greenwood, Brian & Larson, Heidi & Lees, Shelley, 2018. "“We are the heroes because we are ready to die for this country”: Participants' decision-making and grounded ethics in an Ebola vaccine clinical trial," Social Science & Medicine, Elsevier, vol. 203(C), pages 35-42.
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    4. Watson, Sharon, 2022. "‘Don't cross the line, you're a researcher and not an educator’: Incorporating indigenous researchers' moral perspectives to improve ethical protocols in health research," Social Science & Medicine, Elsevier, vol. 315(C).
    5. Kelly, Ann H. & Ameh, David & Majambere, Silas & Lindsay, Steve & Pinder, Margaret, 2010. "'Like sugar and honey': The embedded ethics of a larval control project in The Gambia," Social Science & Medicine, Elsevier, vol. 70(12), pages 1912-1919, June.
    6. Hutchinson, Eleanor & Nayiga, Susan & Nabirye, Christine & Taaka, Lilian & Staedke, Sarah G., 2018. "Data value and care value in the practice of health systems: A case study in Uganda," Social Science & Medicine, Elsevier, vol. 211(C), pages 123-130.
    7. Sariola, Salla & Simpson, Bob, 2011. "Theorising the 'human subject' in biomedical research: International clinical trials and bioethics discourses in contemporary Sri Lanka," Social Science & Medicine, Elsevier, vol. 73(4), pages 515-521, August.
    8. James, Myfanwy & Kasereka, Joseph Grace & Kasiwa, Benjamin & Kavunga-Membo, Hugo & Kambale, Kasonia & Grais, Rebecca & Muyembe-Tamfum, Jean-Jacques & Bausch, Daniel G. & Watson-Jones, Deborah & Lees, , 2023. "Protection, health seeking, or a laissez-passer: Participants’ decision-making in an EVD vaccine trial in the eastern Democratic Republic of the Congo," Social Science & Medicine, Elsevier, vol. 323(C).
    9. Kamat, Vinay R., 2014. "Fast, cheap, and out of control? Speculations and ethical concerns in the conduct of outsourced clinical trials in India," Social Science & Medicine, Elsevier, vol. 104(C), pages 48-55.
    10. Panter-Brick, Catherine & Eggerman, Mark, 2018. "The field of medical anthropology in Social Science & Medicine," Social Science & Medicine, Elsevier, vol. 196(C), pages 233-239.
    11. Reynolds, Lindsey & Cousins, Thomas & Newell, Marie-Louise & Imrie, John, 2013. "The social dynamics of consent and refusal in HIV surveillance in rural South Africa," Social Science & Medicine, Elsevier, vol. 77(C), pages 118-125.
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