Graduate student Puneet Sahota, under the supervision of Dr. Bradley Stoner, will investigate the politics and ethics of medical genetics research (research on the genetic basis of disease) in an American Indian community that is developing an innovative partnership with a genetics research institute. Research on the genetic basis of disease is a contentious issue for American Indians. Some tribal leaders are concerned that genetics data might be used to undermine tribes' claims to being "native" to America, while others view medical/genetics research as a vital source of cures for diseases that disproportionately affect American Indians. Tribes are increasingly seeking control over research agendas, treatment of blood/tissue samples, and patents for drugs or diagnostic tests developed by researchers.
The proposed project will examine an influential yet understudied aspect of biomedicine, medical/genetics research, and will explore how leaders and members of an American Indian tribe negotiate a collective stance towards new biotechnologies. The researcher will examine how the tribe relates to intellectual property law and federal models of research regulation through participant-observation in intra-tribal discussions about medical/genetics research and in negotiations between the tribe and the genetics research institute. Using semi-structured interviews with 60 tribal members and 15 tribal leaders, this project will also explore how tribal members' past experiences with medical/genetics research have affected their notions of biomedical concepts such as "genetic risk" for disease. In these interviews, data will also be collected about tribal members' expectations for future medical/genetics research projects, particularly related to traditional bioethical issues such as ownership of blood/tissue samples, financial compensation to research volunteers, and equitable access to health care.
