Stanford Center for Biomedical Ethics, Stanford University
Thursday 10:15-10:30, Galleria North
Lawsuits and policy changes involving human genetic research have generated increased attention in recent years. In 2004, the Havasupai Tribe filed a lawsuit against Arizona Board of Regents and Arizona State University researchers when they discovered that their DNA samples, initially collected for genetic studies on Type II Diabetes, had also been used in multiple genetic studies without explicit approval from the tribe. The lawsuit resulted in a settlement in April 2010 in which tribal members received $700,000 for compensation, funds for a clinic and school, and return of DNA samples.
Through semi-structured interviews with Institutional Review Board (IRB) chairpersons and biomedical researchers engaged in human genetics research, I examined the impact of the Havasupai lawsuit on human genetic research. Through these interviews, I have identified key concerns and reflections of IRB chairs and researchers on the current state of genetic research involving human subjects and on issues that were raised in the Havasupai lawsuit. My results suggest that the lawsuit has drawn attention to indigenous concerns about genetic studies and that it has increased awareness of indigenous views among researchers and IRBs. My interviews also reveal thoughts from IRB chairs and researchers about how the practice of science has changed, and highlights issues of informed consent, data-sharing, and secondary uses of samples. Overall, concerns about obtaining informed consent from individuals, groups, and indigenous communities pose questions about what constitutes proper consent and present new and expanded ways to engage participants in research.
This study was funded by the National Institutes of Health Postdoctoral Fellowship grant number 5F32HG005931-01.