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Beginning community engagement at a busy biomedical research programme: Experiences from the KEMRI CGMRC-Wellcome Trust Research Programme, Kilifi, Kenya

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  • Marsh, Vicki
  • Kamuya, Dorcas
  • Rowa, Yvonne
  • Gikonyo, Caroline
  • Molyneux, Sassy

Abstract

There is wide acknowledgement of the need for community engagement in biomedical research, particularly in international settings. Recent debates have described theoretical approaches to identifying situations where this is most critical and potential mechanisms to achieve it. However, there is relatively little published experience of community engagement in practice. A major component of the Kenya Medical Research Institute (KEMRI) Wellcome Trust Research Programme is centred on Kilifi District General Hospital and surrounding community of 240,000 local residents. Documented community perceptions of the research centre are generally positive, but many indicate a low understanding of research and therapeutic misconceptions of its activities. As in other settings, these misunderstandings have contributed to concerns and rumours, and potentially undermine ethical aspects of research and local trust in the institution. Through a series of consultative activities, a community engagement strategy has been developed in Kilifi to strengthen mutual understanding between community members and the Centre. One important component is the establishment of a representative local resident network in different geographic locations commonly involved in research, to supplement existing communication channels. Early implementation of the strategy has provided new and diverse opportunities for dialogue, interaction and partnership building. Through the complex social interactions inherent in the community engagement strategy, the centre aims to build context specific ethical relations with local residents and to strengthen understanding of how ethical principles can be applied in practice. Evaluations over time will assess the effectiveness and sustainability of these strategies, provide generalisable information for similar research settings, and contribute to debates on the universality of ethical principles for research. This paper aims to summarise the rationale for community engagement in research, drawing on published literature and local findings, to outline the process of community engagement in Kilifi and to describe issues emerging from its development and early implementation.

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  • 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.
    • Handle: RePEc:eee:socmed:v:67:y:2008:i:5:p:721-733
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    References listed on IDEAS

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    5. 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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    9. 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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    1. 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.
    2. de Vries, Jantina & Jallow, Muminatou & Williams, Thomas N. & Kwiatkowski, Dominic & Parker, Michael & Fitzpatrick, Raymond, 2012. "Investigating the potential for ethnic group harm in collaborative genomics research in Africa: Is ethnic stigmatisation likely?," Social Science & Medicine, Elsevier, vol. 75(8), pages 1400-1407.
    3. 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.
    4. 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.
    5. Marsh, Vicki & Kombe, Francis & Fitzpatrick, Ray & Molyneux, Sassy & Parker, Michael, 2013. "Managing misaligned paternity findings in research including sickle cell disease screening in Kenya: ‘Consulting communities’ to inform policy," Social Science & Medicine, Elsevier, vol. 96(C), pages 192-199.
    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.

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