Genetic Research & Native Communities
Impact of the Havasupai Lawsuit on Genetic Research Studies
- 1. Describe the impact of the Havasupai lawsuit on genetic researchers and regulatory boards.
- 2. Expand the discussions around informed consent to identify unique concerns and challenges of engaging communities and groups in research.
In 2003, members of the Havasupai tribe in Arizona discovered their DNA samples collected for genetic studies on Type II Diabetes were also used without their approval for studies on schizophrenia, migration, and inbreeding. The Havasupai Tribe filed a lawsuit in 2004 against Arizona Board of Regents and Arizona State University researchers for misuse of genetic materials. The lawsuit articulated concerns about lack of informed consent, violation of civil rights through mishandling of blood samples, unapproved use of data, and violation of medical confidentiality. Eventually, the Arizona Board of Regents v. Havasupai Tribe case 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.
The purpose of this study is to describe the impact of the Arizona Board of Regents v. Havasupai Tribe lawsuit on genetic research involving human subjects. Through semi-structured interviews and surveys, I have identified key concerns, opinions, and attitudes of Institutional Review Board (IRB) Chairpersons and biomedical researchers engaged in genetics research involving human subjects. The results will provide a deeper understanding of how concerns raised by the lawsuit and potential conflicts in genetic research affect decisions made by researchers and review boards and may indicate the extent to which these groups are shifting paradigms for informed consent. Concerns about obtaining informed consent from individuals, groups, and communities pose questions on what consists of proper consent and presents new opportunities to expand ways to engage communities in research.
- Garrison, N. Native American ethical and cultural issues with genomics and personalized medicine, in American Society for Human Genetics. 2010: Washington, DC.
- Garrison, N. Genomic Justice for Indigenous Americans, in Science, Ethics, and Justice: Reconsiderations and New Directions, NSF-funded workshop. 2011: San Francisco, CA.
- Garrison, N. Impact of the Havasupai Lawsuit on Genetic Research Studies, in American College of Medical Genetics Annual Meeting, 2011: Vancouver, CA and ELSI Congress, 2011: Chapel Hill, NC.
- Garrison, N. National and International Perspectives on Community-Based and Community Engaged ELSI Research, in ELSI Congress. 2011: Chapel Hill, NC.
- Garrison, N. Rebuilding Our Nations: Strategies of Indigenous People to Navigate the Ethical, Legal and Social Landscape of Genomic Research, in ELSI Congress. 2011: Chapel Hill, NC.
Dr. Nanibaa' Garrison, CIRGE Post-Doctoral Fellow (former)