Evaluating community perceptions and ethical considerations in genetics research in small scale populations

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PROJECT SUMMARY Historically, minority populations and indigenous peoples have borne the brunt of poorly implemented regulations to protect human subjects in research. As genomic research expands to be more inclusive of global diversity, indigenous perspectives about genetic research and data management should be considered, and the success of dissemination efforts to participants should be evaluated. Research on participant perspectives on genomic research in Africa that aim to dissect current governance and consent models demonstrate population specific engagement is necessary to decipher preferences. In Kenya, where participation in genetic research is amongst the highest in Africa, it is also one of the most understudied for participant perspectives amongst researchers and participants from small scale societies and urban communities. Consent and governance models should be built on participant perspectives which offer culturally relevant motivations that local research ethics committees can use to better address consent documents and research processes. Our proposed study will address whether and how Western ethical practices used in genetic studies accurately align (or fail to align) with the understandings, attitudes, and perceptions of the Turkana, Borana, Rendille, and Samburu pastoral populations of northern Kenya. Ongoing genetic work by our group has characterized the evolutionary history and genetic structure among and between these groups, and this unique relationship facilitates the opportunity to explore ethical practices and concerns. Specifically, we have three aims that will be assessed across all four populations. First, we will assess the effectiveness of dissemination efforts and materials by determining the level of understanding of genetics research using pre- and post-dissemination assessments. Second, we will identify and compare attitudes and perceptions towards genetics and genomic research. The third aim will characterize in-depth views on privacy, consent, data use, and governance of data. We will test the generalizability of these results to a novel population in Kenya so that we may observe how other populations and researchers may use these data. The growing field of research ethics has produced many ethical codes, suggestive guidelines to work with small scale populations, and perspectives of Western populations and indigenous populations from the Americas and Australia detailing the concerns elicited by genetic studies. Mostly, these fail to include the perspectives of African populations and also fail to determine the impact of the work itself. The research proposed here will provide a framework for collaborating with small indigenous populations, generate new knowledge about the success of dissemination efforts and document specific ethical concerns and perspectives of the Turkana, Borana, Rendille and Samburu.