A qualitative study using traditional community assemblies to investigate community perspectives on informed consent and research participation in western Kenya

Abstract

BackgroundInternational collaborators face challenges in the design and implementation of ethical biomedical research. Evaluating community understanding of research and processes like informed consent may enable researchers to better protect research participants in a particular setting; however, there exist few studies examining community perspectives in health research, particularly in resource-limited settings, or strategies for engaging the community in research processes. Our goal was to inform ethical research practice in a biomedical research setting in western Kenya and similar resource-limited settings.MethodsWe sought to use mabaraza, traditional East African community assemblies, in a qualitative study to understand community perspectives on biomedical research and informed consent within a collaborative, multinational research network in western Kenya. Analyses included manual, progressive coding of transcripts from mabaraza to identify emerging central concepts.ResultsOur findings from two mabaraza with 108 community members revealed that, while participants understood some principles of biomedical research, they emphasized perceived benefits from participation in research over potential risks. Many community members equated health research with HIV testing or care, which may be explained in part by the setting of this particular study. In addition to valuing informed consent as understanding and accepting a role in research activities, participants endorsed an increased role for the community in making decisions about research participation, especially in the case of children, through a process of community consent.ConclusionsOur study suggests that international biomedical research must account for community understanding of research and informed consent, particularly when involving children. Moreover, traditional community forums, such as mabaraza in East Africa, can be used effectively to gather these data and may serve as a forum to further engage communities in community consent and other aspects of research.

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“…These processes have included conducting community interviews, focus groups, and rapid ethnographic assessments (Skinner et al 2015;Tindana et al 2012) to identify perceptions and barriers to participate in community-based genetic studies; and working with communities through community advisory boards (Quinn 2004), community fora (Mascalzoni et al 2008) and community consultations (Dickert and Sugarman 2005) to increase engagement of community members in conducting genomic studies. Several genomic studies have reported successful outcomes using various community engagement processes Marsh et al 2013;Marsh et al 2010;Skinner et al 2015;Tindana et al 2012;Vreeman et al 2012), and particularly in designing an informed consent process with appropriate vocabularies that address more complex ethical issues, such as whether or not genetic data should be given to participants (Lemke et al 2012;Skinner et al 2015).…”

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