Nanibaa' Garrison, PhD
Geneticist and bioethicist Nanibaa' Garrison was born and raised on the Navajo Nation, home to the second-largest American Indian tribe in the U.S. with more than 300,000 enrolled members. Her background and connection puts her in a unique position to bridge the gap in trust that exists for many American Indians when considering taking part in research. With funding from Seattle Children's Center for Clinical and Translational Research, Garrison is leading a one-year study to ask Navajo community members about their concerns and attitudes about genetic research.
In 2002, the Navajo Nation placed a moratorium on genetic research studies within their boundaries after consultation with tribal leaders, traditional healers, and Navajo physicians and scientists, who expressed concerns such as how genetic samples could be used and shared, as well as concerns about privacy and ancestry. In the years leading up to the moratorium, the Navajo Nation Human Research Review Board had begun to receive more and more genetic research proposals, and they asked Navajo leadership for guidance on how to evaluate the protocols. There were concerns expressed that the tribal leadership didn't have existing laws, rules and regulations to evaluate the potential risks and benefits of the proposed research projects. So a moratorium on genetic research was put in place.
Garrison's study takes place against a backdrop of mistrust stemming from some researchers using genetic material from American Indian people in ways they had not consented to. Between 1990 and 1994, DNA samples were collected from hundreds of Havasupai Tribe members for genetic studies on diabetes; more than half of this tribe has type 2 diabetes. The researchers verbally informed the tribe members, who live in a remote part of the Grand Canyon, about the research project, then had them sign the consent forms. The Havasupai later learned that their DNA samples were shared with other researchers and used without their knowledge for studies on schizophrenia and ethnic migration. In 2004, they sued the Arizona Board of Regents and won a settlement in 2010.
Recently, the Navajo Nation began to discuss possibly lifting the moratorium. One requirement before the moratorium can be lifted is developing a policy 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 a policy, Garrison proposed a study to assess people’s perspectives on genetics. 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, in collaboration with geneticist Katrina Claw, PhD, and environmental health scientist Clarita Lefthand-Begay, PhD, both Navajo and both at the University of Washington, 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, storage of samples, and results?
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.
The Navajo community, and indigenous people more broadly, continue to be starkly underrepresented in genetic research, remaining at around a 0.05% participation rate for genome-wide association studies. Garrison hopes to address the limited public understanding of genetic research by developing educational materials for the Navajo. It is important that they understand the limitations of research, as well as the potential benefits, such as identifying genetic variants that affect an individual's response to a specific medicine, for example.
It is clear that much work needs to be done to convey what genetic research can and cannot do, including how communities might benefit from participation in this type of research. Learning what concerns the Navajo have about genetic research will allow researchers to directly address the concerns and work with tribal elders to ensure appropriate protections are in place, allowing the tribe to benefit from respectful research protocols.
Representative Research Papers
- Garrison NA., Considerations for returning research results to culturally diverse participants and families of decedents, Journal of Law, Medicine and Ethics, 2015, 43:569–57.
- Garrison NA., Genomic justice for indigenous Americans: Impact of the Havasupai case on genetic research, Science, Technology & Human Values, 2013, 38(2):201-223.