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Understanding of informed consent in a low-income setting: three case studies from the Kenyan coast

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

Abstract

In our research unit on the Kenyan Coast, parents sign consent for over 4000 children to be involved in research activities every year. Children are recruited into studies ranging from purely observational research to the testing of new procedures and drugs. Thousands more community members consent verbally or in writing to the interviews and sometimes invasive procedures required in community-based research. Although every study and consent form is reviewed in advance by independent national and international committees, the views and understanding of the 'subjects' of these activities had not been documented before this study. In this paper, we focus on participant understanding of one field-based and two hospital-based studies, all of which involve blood sampling. The findings highlight a range of inter-related issues for consideration in the study setting and beyond, including conceptual and linguistic barriers to communicating effectively about research, the critical and complex role of communicators (fieldworkers and nurses) in consent procedures, features of research unit-community relations which impact on these processes, and the special sensitivity of certain issues such as blood sampling. These themes and emerging recommendations are expected to be relevant to, and would benefit from, experiences and insights of researchers working elsewhere.

Suggested Citation

  • 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.
  • Handle: RePEc:eee:socmed:v:59:y:2004:i:12:p:2547-2559
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    Citations

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    Cited by:

    1. Lea Pare Toe & Nourou Barry & Anselme D. Ky & Souleymane Kekele & Wilfrid I. Meda & Korotimi Bayala & Mouhamed Drabo & Delphine Thizy & Olivia Majorin & Isabelle Coche & Patric Stephane Epopa & Moussa, 2022. "A multi-disciplinary approach for building a common understanding of genetic engineering for malaria control in Burkina Faso," Palgrave Communications, Palgrave Macmillan, vol. 9(1), pages 1-8, December.
    2. 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.
    3. 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.
    4. 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.
    5. Katwa, Joseph Kigen & Joyce Lugulu, 2022. "Understanding Informed Consent: An in Depth Analysis," International Journal of Research and Innovation in Social Science, International Journal of Research and Innovation in Social Science (IJRISS), vol. 6(5), pages 762-769, May.
    6. 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.
    7. 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.
    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. 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.
    10. Josephson, Anna & Smale, Melinda, 2020. "What do you mean by ‘informed consent’? Ethics in economic development research," MetaArXiv py654, Center for Open Science.
    11. 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.
    12. Anna Josephson & Melinda Smale, 2021. "What Do you Mean by “Informed Consent”? Ethics in Economic Development Research†," Applied Economic Perspectives and Policy, John Wiley & Sons, vol. 43(4), pages 1305-1329, December.
    13. Frank Baiden & Seth Owusu-Agyei & Eunice Okyere & Mathilda Tivura & George Adjei & Daniel Chandramohan & Jayne Webster, 2012. "Acceptability of Rapid Diagnostic Test-Based Management of Malaria among Caregivers of Under-Five Children in Rural Ghana," PLOS ONE, Public Library of Science, vol. 7(9), pages 1-9, September.
    14. 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.

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