Body Fragmentation: Native American Community Members’ Views on Specimen Disposition in Biomedical/Genetics Research

Abstract

Background: Genetics research is controversial in Native American communities, and the disposition and ownership of biological specimens are central issues. Within Native communities, there is considerable variety in tribal members’ views. This article reports the results from an ethnographic study conducted with a Native American community in the southwestern United States. The purpose of this study was to examine the relationship (past and present) between the tribe and biomedical/genetics research. Methods: Qualitative interviews were conducted with 53 members of a Native American community. Interviewees were purposively recruited to include an approximately equal number of past research participants and nonparticipants, as well as individuals with and without diabetes. Tribal members were also asked whether they identified as a “traditional person,” an emic category used in the community. Results: Tribal members’ views on specimen disposition were linked with their identification as a traditional or nontraditional person. Individuals identifying as traditional people were more likely to believe that biological specimens should be returned at the end of a study and should not be used after the research participant's death, and that they were the property of the individual who provided them. These perspectives were related to broader concerns about fragmentation of the body-self. Conclusions: Through gaining an understanding of the cultural logic related to specimen disposition, researchers may be able to work more effectively with Native American communities on developing procedures for genetics studies. The process of informed consent and other study procedures can be adapted to be culturally respectful of Native American communities.