Developing strategies for tribal oversight of genetics and data sharing

American Indian and Alaska Native people continue to be starkly underrepresented in genetic research. Multiple factors may account for their lack of research participation, ranging from not being invited to participate in research to mistrust resulting from incidences of researchers using genetic material from American Indian people in ways they had not consented to.

In one well-publicized case, DNA samples were collected between 1990 and 1994 from hundreds of Havasupai Tribe members for genetic studies on diabetes, which affected more than half of this tribe. The researchers informed the tribe members, who live in a remote part of the Grand Canyon, about the research project and indicated that the samples would be used for diabetes research. The Havasupai later learned that their DNA samples were shared with other researchers and used without their knowledge for studies on schizophrenia and human migration. In 2004, they sued the Arizona Board of Regents and in 2010 were awarded a settlement.

Bioethics faculty Nanibaa’ A. Garrison is leading two research projects to assess American Indian peoples’ views on genetics research. For her study Genomics and Native Communities: Perspective, Ethics and Engagement, Garrison and study team member Leah Tanner have interviewed Native American tribal leaders, researchers and policymakers to identify issues and barriers to American Indian participation in genetics research. Bioethics staff Krysta Barton, Katie Porter and Devan Duenas, along with master's student Thyvu Mai in public health genetics, are carrying out the analysis of the interviews, data management and study logistics.

Garrison will share her findings with the National Congress of American Indians, a nonprofit organization that represents the interests of many tribes. Its Policy Research Center helps set and influence policy at both the federal level and at the tribal level.

Recognized for her expertise in bioethics and genomics, Garrison, who is also a member of the Navajo Nation, was invited to work with the Navajo Nation to develop a genetic research policy to enable the Tribe to lift their moratorium on genetic research that has been in place since 2002. The policy aims to provide guidance for what types of genetic research projects would be considered, under what conditions and with what safeguards in place.

To inform the development of the genetic research policy for the Tribe, Garrison is leading a second study, Perspectives on Genetic Research in the Navajo Nation, to learn more about Navajo people’s viewpoints on genetics, data sharing and cultural considerations regarding biospecimen use. To date, no empirical studies have been done to ask about key concerns, needs and desires of the Navajo regarding this topic.

Through semistructured interviews with Navajo community members, Navajo health professionals, policy experts and tribal leaders, Garrison hopes to learn:

  • What would the Navajo community want to see included in a genetic research policy?
  • What cultural principles should the policy have for the management of genetic study data, results and storage of samples?

The researchers will share what they learn from these interviews with the Navajo Nation in the hopes that this research will help the Navajo Nation to create a well-informed policy regarding genetic research that aligns with their values.

Garrison also hopes to address the limited public understanding of genetics research by developing educational materials for tribes. It is important that they understand the limitations of genetic research as well as the potential benefits, such as identifying genetic variants that affect an individual's response to a specific medicine, for example.

Ultimate Goal

To explore the ethical, social and cultural issues of American Indians in regards to genetic research through engagement with tribal leaders.

Primary Collaborators

  • Wylie Burke, Deborah Bowen, Katrina Claw, University of Washington
  • Leah Tanner, Seattle Children’s
  • Ellen Wright Clayton, Vanderbilt University

Funding

  • National Human Genome Research Institute
  • Pediatric Pilot Fund, Center for Clinical and Translational Research, Seattle Children's
  • Health Equity Research Seed Grant, Center for Diversity and Health Equity, Seattle Children’s

Representative Publications