African American Community Review of Genetic Research

This is a qualitative, ethnographic study that is designed to generate a number of empirical examples of community review in action. Project investigators 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 as well as 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. It is anticipated that different levels of community review will be applicable to different kinds of local and nested communities.