Experiences with community engagement and informed consent in a genetic cohort study of severe childhood diseases in Kenya |
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| Authors: | Vicki M Marsh Dorcas M Kamuya Albert M Mlamba Thomas N Williams Sassy S Molyneux |
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| Institution: | (1) Wellcome Trust Research Programme, Kenya Medical Research Institute (KEMRI), PO Box 230, 80108 Kilifi, Kenya;(2) Centre for Clinical Vaccinology and Tropical Medicine, Nuffield Department of Medicine, University of Oxford, Old Road Campus, OX3 7LJ Headington, Oxford, UK;(3) INDEPTH Network, PO Box KD213, Kanda, Accra, Ghana |
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| Abstract: | Background The potential contribution of community engagement to addressing ethical challenges for international biomedical research
is well described, but there is relatively little documented experience of community engagement to inform its development
in practice. This paper draws on experiences around community engagement and informed consent during a genetic cohort study
in Kenya to contribute to understanding the strengths and challenges of community engagement in supporting ethical research
practice, focusing on issues of communication, the role of field workers in 'doing ethics' on the ground and the challenges
of community consultation. |
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