IDEAS home Printed from https://ideas.repec.org/a/eee/socmed/v67y2008i5p721-733.html
   My bibliography  Save this article

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

Author

Listed:
  • 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.

Suggested Citation

  • 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
    as

    Download full text from publisher

    File URL: http://www.sciencedirect.com/science/article/pii/S0277-9536(08)00090-7
    Download Restriction: Full text for ScienceDirect subscribers only
    ---><---

    As the access to this document is restricted, you may want to search for a different version of it.

    References listed on IDEAS

    as
    1. 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.
    2. Strauss, R.P. & Sengupta, S. & Quinn, S.C. & Goeppinger, J. & Spaulding, C. & Kegeles, S.M. & Millett, G., 2001. "The role of community advisory boards: Involving communities in the informed consent process," American Journal of Public Health, American Public Health Association, vol. 91(12), pages 1938-1943.
    3. Mitchell, Kirstin & Nakamanya, Sarah & Kamali, Anatoli & Whitworth, James A. G., 2002. "Balancing rigour and acceptability: the use of HIV incidence to evaluate a community-based randomised trial in rural Uganda," Social Science & Medicine, Elsevier, vol. 54(7), pages 1081-1091, April.
    4. 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.
    5. 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.
    6. Quinn, S.C., 2004. "Protecting human subjects: The role of community advisory boards," American Journal of Public Health, American Public Health Association, vol. 94(6), pages 918-922.
    7. Gollust, S.E. & Apse, K. & Fuller, B.P. & Miller, P.S. & Biesecker, B.B., 2005. "Community involvement in developing policies for genetic testing: Assessing the interests and experiences of individuals affected by genetic conditions," American Journal of Public Health, American Public Health Association, vol. 95(1), pages 35-41.
    8. Dickert, N. & Sugarman, J., 2005. "Ethical goals of community consultation in research," American Journal of Public Health, American Public Health Association, vol. 95(7), pages 1123-1127.
    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.
    Full references (including those not matched with items on IDEAS)

    Citations

    Citations are extracted by the CitEc Project, subscribe to its RSS feed for this item.
    as


    Cited by:

    1. 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.
    2. 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.
    3. 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.
    4. 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.
    5. 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.
    6. 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.

    Most related items

    These are the items that most often cite the same works as this one and are cited by the same works as this one.
    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. 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.
    3. Gooding, Kate & Phiri, Mackwellings & Peterson, Ingrid & Parker, Michael & Desmond, Nicola, 2018. "Six dimensions of research trial acceptability: how much, what, when, in what circumstances, to whom and why?," Social Science & Medicine, Elsevier, vol. 213(C), pages 190-198.
    4. 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.
    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. 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.
    7. 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.
    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. 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.
    10. Mosavel, Maghboeba & Simon, Christian & van Stade, Debbie & Buchbinder, Mara, 2005. "Community-based participatory research (CBPR) in South Africa: Engaging multiple constituents to shape the research question," Social Science & Medicine, Elsevier, vol. 61(12), pages 2577-2587, December.
    11. 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.
    12. Ntshanga, Sbongile P. & Ngcobo, Paulos S. & Mabaso, Musawenkosi L.H., 2010. "Establishment of a Community Advisory Board (CAB) for tuberculosis control and research in the Inanda, Ntuzuma and KwaMashu (INK) area of KwaZulu-Natal, South Africa," Health Policy, Elsevier, vol. 95(2-3), pages 211-215, May.
    13. 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.
    14. Maureen Njue & Francis Kombe & Salim Mwalukore & Sassy Molyneux & Vicki Marsh, 2014. "What Are Fair Study Benefits in International Health Research? Consulting Community Members in Kenya," PLOS ONE, Public Library of Science, vol. 9(12), pages 1-21, December.
    15. Gail E. Henderson, 2008. "Introducing Social and Ethical Perspectives on Gene—Environment Research," Sociological Methods & Research, , vol. 37(2), pages 251-276, November.
    16. 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.
    17. Small, Will & Maher, Lisa & Kerr, Thomas, 2014. "Institutional ethical review and ethnographic research involving injection drug users: A case study," Social Science & Medicine, Elsevier, vol. 104(C), pages 157-162.
    18. Debbie Haski-Leventhal & Mehrdokht Pournader & Andrew McKinnon, 2017. "The Role of Gender and Age in Business Students’ Values, CSR Attitudes, and Responsible Management Education: Learnings from the PRME International Survey," Journal of Business Ethics, Springer, vol. 146(1), pages 219-239, November.
    19. J. Michael Oakes, 2002. "Risks and Wrongs in Social Science Research," Evaluation Review, , vol. 26(5), pages 443-479, October.
    20. Chandrika Manjunath & Oluwatomilona Ifelayo & Clarence Jones & Monisha Washington & Stanton Shanedling & Johnnie Williams & Christi A. Patten & Lisa A. Cooper & LaPrincess C. Brewer, 2019. "Addressing Cardiovascular Health Disparities in Minnesota: Establishment of a Community Steering Committee by FAITH! (Fostering African-American Improvement in Total Health)," IJERPH, MDPI, vol. 16(21), pages 1-20, October.

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:eee:socmed:v:67:y:2008:i:5:p:721-733. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: Catherine Liu (email available below). General contact details of provider: http://www.elsevier.com/wps/find/journaldescription.cws_home/315/description#description .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.