Katherine Drabiak-Syed, JD
Indiana University Center for Bioethics
In March 2010, the Havasupai Tribe (Tribe) and Arizona Board of Regents (ABOR) arrived at a settlement agreement relating to litigation over ABOR’s alleged misuse of the Tribe’s blood samples originally collected for diabetes research. Claims set forth in the Tribe’s complaints and provisions in the settlement agreement highlighted how our current interpretation of the Common Rule’s requirements and the associated standards governing human subjects research fail to adequately protect all subjects for genetic research using stored biological materials. Specifically, the current framework ignores pertinent cultural and dignitary concerns that pose risks both to individual subjects and indigenous groups as a whole. Both researchers and courts adopting the mainstream assessment of what constitutes a cognizable harm classified the Havasupai’s reaction as hysterical and hypersensitive, and accordingly glossed over indigenous considerations of blood’s spiritual meaning and its centrality to cultural preservation. Continued utilization of the current system poses serious consequences to both indigenous groups’ cultural identity, health outcomes, as well as the ability for to conduct genetic research using biological materials from indigenous communities. If researchers want to study the genetic component of why indigenous groups as a population suffer the highest mortality rates from preventable diseases, then it is imperative to integrate the study population’s evaluation of risk and harm.