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Trust and informed consent: insights from community members on the Kenyan coast

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  • Molyneux, C.S.
  • Peshu, N.
  • Marsh, K.

Abstract

Trust is an important theme running through the literature on the ethics of biomedical research, but it is rarely given centre stage. In this paper, we present data gathered from a study aimed at exploring community views regarding the informed consent processes carried out by a large research centre on the Kenyan Coast. The findings point to the centrality of trust and elements of mistrust in general community views, in parents' (mis)understanding of studies they consent their children to be involved in, in refusals and concerns, and in community members' views about whether informed consent is a relevant and practical model to follow. Tentative ideas on how trust and a healthy mistrust might be balanced highlight the importance of strengthening communication surrounding basic health care as well as research, and of fostering 'an inner generated ethic of service'. The latter is particularly fundamental, but cannot be built and regulated through the laws, policies and guidelines that currently govern biomedical research practice.

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  • Molyneux, C.S. & Peshu, N. & Marsh, K., 2005. "Trust and informed consent: insights from community members on the Kenyan coast," Social Science & Medicine, Elsevier, vol. 61(7), pages 1463-1473, October.
    • Handle: RePEc:eee:socmed:v:61:y:2005:i:7:p:1463-1473
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    References listed on IDEAS

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    1. Molyneux, C. S. & Peshu, N. & Marsh, K., 2004. "Understanding of informed consent in a low-income setting: three case studies from the Kenyan coast," Social Science & Medicine, Elsevier, vol. 59(12), pages 2547-2559, December.
    2. Edwards, Sarah J. L. & Lilford, Richard J. & Thornton, Jim & Hewison, Jenny, 1998. "Informed consent for clinical trials: in search of the "best" method," Social Science & Medicine, Elsevier, vol. 47(11), pages 1825-1840, December.
    3. Gilson, Lucy, 2003. "Trust and the development of health care as a social institution," Social Science & Medicine, Elsevier, vol. 56(7), pages 1453-1468, April.
    4. Mechanic, David & Meyer, Sharon, 2000. "Concepts of trust among patients with serious illness," Social Science & Medicine, Elsevier, vol. 51(5), pages 657-668, September.
    5. Birungi, Harriet, 1998. "Injections and self-help: risk and trust in Ugandan health care," Social Science & Medicine, Elsevier, vol. 47(10), pages 1455-1462, November.
    6. Resnik, David B., 2001. "Ethical dilemmas in communicating medical information to the public," Health Policy, Elsevier, vol. 55(2), pages 129-149, February.
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    Cited by:

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    6. 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.
    7. Harper, Ian, 2007. "Translating ethics: Researching public health and medical practices in Nepal," Social Science & Medicine, Elsevier, vol. 65(11), pages 2235-2247, December.
    8. Lawrence, David S. & Ssali, Agnes & Moshashane, Neo & Nabaggala, Georgina & Maphane, Lebogang & Harrison, Thomas S. & Meya, David B. & Jarvis, Joseph N. & Seeley, Janet, 2022. "Decision making in a clinical trial for a life-threatening illness: Therapeutic expectation, not misconception," Social Science & Medicine, Elsevier, vol. 305(C).
    9. 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.
    10. 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.
    11. Maureen Njue & Sassy Molyneux & Francis Kombe & Salim Mwalukore & Dorcas Kamuya & Vicki Marsh, 2015. "Benefits in Cash or in Kind? A Community Consultation on Types of Benefits in Health Research on the Kenyan Coast," PLOS ONE, Public Library of Science, vol. 10(5), pages 1-17, May.
    12. Janet Boddy, 2014. "Research across cultures, within countries: Hidden ethics tensions in research with children and families?," Progress in Development Studies, , vol. 14(1), pages 91-103, January.
    13. Maria Lahman & Monica Geist & Katrina Rodriguez & Pamela Graglia & Kathryn DeRoche, 2011. "Culturally responsive relational reflexive ethics in research: the three rs," Quality & Quantity: International Journal of Methodology, Springer, vol. 45(6), pages 1397-1414, October.
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