Engaging Communities to Strengthen Research Ethics in Low-Income Settings: Selection and Perceptions of Members of a Network of Representatives in Coastal Kenya

• Published in: Developing world bioethics Vol. 13; no. 1; pp. 10 - 20
• Main Authors: Kamuya, Dorcas M., Marsh, Vicki, Kombe, Francis K., Geissler, P. Wenzel, Molyneux, Sassy C.
• Format: Journal Article
• Language: English
• Published: England Blackwell Publishing Ltd 01.04.2013; Wiley Subscription Services, Inc
• Subjects: Adolescent; Adult; Advisory committees; Aged; Benefits; Bioethics; Clinical Trials as Topic - ethics; Communities; community engagement; Community involvement; community network; Community-Based Participatory Research - ethics; Conflict (Psychology); Conflict of Interest; developing countries; Ethics; Female; Geographic location; Group composition; Health; Humans; Informed Consent - ethics; Interdisciplinary Communication; International Cooperation; Intervention; Kenya; Leadership; Local communities; Low income; Low Income Groups; Male; Middle Aged; Moral Obligations; Perceptions; Poverty; Questionnaires; representation; Research Ethics; Research methods; Research Personnel - ethics; Research Personnel - standards; Research Personnel - trends; Researcher-Subject Relations - ethics; Social Environment; Social Perception; Values; Vulnerability; Kenya
• ISSN: 1471-8731; 1471-8847; 1471-8847
• DOI: 10.1111/dewb.12014

There is wide agreement that community engagement is important for many research types and settings, often including interaction with ‘representatives’ of communities. There is relatively little published experience of community engagement in international research settings, with available information focusing on Community Advisory Boards or Groups (CAB/CAGs), or variants of these, where CAB/G members often advise researchers on behalf of the communities they represent. In this paper we describe a network of community members (‘KEMRI Community Representatives’, or ‘KCRs’) linked to a large multi‐disciplinary research programme on the Kenyan Coast. Unlike many CAB/Gs, the intention with the KCR network has evolved to be for members to represent the geographical areas in which a diverse range of health studies are conducted through being typical of those communities. We draw on routine reports, self‐administered questionnaires and interviews to: 1) document how typical KCR members are of the local communities in terms of basic characteristics, and 2) explore KCR's perceptions of their roles, and of the benefits and challenges of undertaking these roles. We conclude that this evolving network is a potentially valuable way of strengthening interactions between a research institution and a local geographic community, through contributing to meeting intrinsic ethical values such as showing respect, and instrumental values such as improving consent processes. However, there are numerous challenges involved. Other ways of interacting with members of local communities, including community leaders, and the most vulnerable groups least likely to be vocal in representative groups, have always been, and remain, essential.