Puneet Chawla Sahota (Penn Post-Doc)
10/3/2013 *in Rm. 345
This presentation will examine how competing desires shaped the multi-faceted relationship between a Southwestern Native American community and biomedical/genetics research. Tribal members navigated tensions between their desire for a solution to the diabetes epidemic versus a desire to maintain the integrity of community “traditions.” Tribal members reacted in divergent ways to previous research studies reporting that Native Americans had genetic risk factors for diabetes. Some interviewees felt fatalistic about developing diabetes as a result, while others were motivated to try to prevent the disease. Community members who had participated in past medical/genetics research studies viewed these studies as a critical source of health care, particularly for diabetes prevention and management. However, community members who identified as “traditional people” also commonly wanted biological specimens collected for research to be returned and/or disposed of in a ceremonial manner. During the fieldwork period, the tribal community formalized its unique partnership with a genetics research institute through a contract stipulating shared intellectual property rights for the tribe and the institute. Through taking control of biological specimens/data and research more broadly, tribal members are tightening the boundaries around their community and seeking to maintain its physical and cultural integrity.