University of Oklahoma Norman

African American Community Review of Genetic Research

Morris W. Foster, Ph.D.
morris.w.foster-1@ou.edu

Project Description

Community review of research into human genetic variation raises a number of questions:

1. How can models developed in Native American populations be adapted to other socially identifiable populations?
2. Can communities that lack inclusive public authorities reach a consensus about a study?
3. Can community review be carried out successfully in dispersed populations?
4. Can such a process evaluate the implications for multiple, nested levels of social identity?
5. How can community-initiated research questions, design modifications, and concerns about study implications reasonably be incorporated into researcher-initiated studies?

We have established a working relationship with three diverse African American populations in Oklahoma: 1) rural all-Black towns that were initially established in the 1890s; 2) rural populations of Freedmen who were initially brought to Oklahoma in the 1830s by slave-owning members of the Five Civilized Tribes; and 3) the urban African American population of Oklahoma City, which is comprised of complex, heterogeneous, and overlapping local social networks and communities. A collaborative study of variation in haplotypes associated with prostate cancer will be proposed in each of these populations. A process of community review will be undertaken in each local community as well as in higher-order, nested communities to identify appropriate social units and networks to engage in discussions about research questions and design human subjects issues and protections. Community members will assist in developing culturally appropriate informed consent protocols. The combined ethnographic and genetic study will provide a crucial context for understanding the population-specific implications of research on human genetic variation.

This is a qualitative, ethnographic project that is designed to generate a number of empirical examples of community review in action. Those diverse examples will illuminate problems in the community review process and give us opportunities to devise solutions for them. We anticipate that different levels of community review will be applicable to different kinds of local and nested communities.