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.