Research on the genetic basis of disease (hereafter termed medical/genetics research) is a contentious issue for American Indians. Some tribal leaders are concerned that genetics data might be used to challenge traditional tribal creation stories and undermine tribes’ claims to being “native” to America. Yet, many tribal leaders also view medical/genetics research as a potential source of cures for diseases that disproportionately affect American Indians, including diabetes, heart disease, and some types of cancer. Tribes’ concerns about genetics research have prompted them to seek greater control over research agendas, storage of biological specimens (blood/tissue samples, DNA, etc.), and patents for drugs or diagnostic tests developed by researchers.

My dissertation research explores an American Indian community’s relationship with medical/genetics research. I spent 20 months conducting fieldwork with an American Indian community in the Southwest, during which I observed the community develop a unique partnership with a genetics research group. Members of the community have participated extensively in past medical research projects. During my fieldwork, I conducted in-depth interviews with tribal leaders and community members in which I examined interviewees’ experiences with and opinions about medical/genetics research. First, I explored the impact of past medical research on community members’ ideas about their “risk” for disease and their health-related behaviors. Second, I investigated community members’ and tribal leaders’ opinions on future medical/genetics research that will be conducted in the community. I focused closely on interviewees’ opinions on the treatment of biological specimens, including who “owns” the specimens and other intellectual property issues that might emerge in medical/genetics research. Finally, I examined how the community is collectively defining its response to medical/genetics research and creating institutional mechanisms for regulating research.

I hope that this work will contribute to the fields of medical anthropology, biomedicine, and bioethics through providing ethnographic information on how American Indian community members negotiate the complicated issues raised by medical/genetics research. This work was supported by grants from the National Science Foundation and the Wenner-Gren Foundation.