Genomes, Research and Race

In this presentation I will explore issues that research from analyses of personal genomics and "anonymous" full genome scans raise for U.S. minority groups. I also present views from scientists involved in trying to diversify such research in order to positively address health disparities. Based on anthropological methods of ethnography, interviews, participant-observation, and fieldwork, in two laboratories where critical developments in genomics and health disparities are theorized to take place, I discuss how recruitment of African-Americans for genetic studies is often solely framed in terms of health disparities when larger issues of scientific interest in human variation are also in play.

I argue that "access" to genetic research and "barriers" to genetic research often overlap for under-represented groups when histories of mistrust, variable scientific literacy, as well as what I call a "cultural investment" in genetics, are at issue. Important to this latter definition is the sense that many African-Americans may not perceive of involvement in genetic research as a safe venture for themselves and their larger communities. This is increasingly due to societal perceptions that genetic privacy may be difficult to guarantee and that misuse of information may expose individuals, families and communities to unwanted stigma, discrimination and/or exploitation of one's genetic identity.

I will also discuss specific cultural and sociological issues that may affect people's willingness to participate in research. Specifically, I highlight people's fears related to forensic uses of African-American DNA collected for health research purposes as well as perceptions within educational settings on health disparities and genetic causes. Lastly, I assess public attitudes about genomic approaches to reducing health disparities by reading current legislation tied to the Obama healthcare bill that proposes a racially diverse national genomic database.