Genomics and Native Communities: Perspectives, Ethics, and Engagement

Candidate Dr. Nanibaa' Garrison is an Assistant Professor at Vanderbilt University on the tenure-track in the Center for Biomedical Ethics and Society with a primary appointment in the Department of Pediatrics and a secondary appointment in Anthropology. She completed a Ph.D. in genetics at Stanford University and postdoctoral fellowship at the Center for Integration of Research on Genetics & Ethics (CIRGE) within the Stanford Center for Biomedical Ethics (SCBE) with the support of an NIH F32 postdoctoral fellowship. During the five years of this career development award, she plans to gain expert level knowledge in the ethical, social, and cultural implications of genetics research, with a particular focus on community engaged research with American Indian stakeholders. Her long-term goal is to conduct an independent research program where she becomes a trusted intermediary who understands science, research ethics, and cultural concerns involving the inclusion of minority populations in genetics research, including issues on biobanking and clinical trials. She seeks to pursue an academic career, bridging academia with community-engaged research, to emerge as a leader working with tribes and minority communities to ensure ethical engagement with research. She proposes strong mentorship and a relevant career development plan that will enable her to successfully compete for independent funding through R01 grant mechanisms. Environment Dr. Garrison has assembled a mentorship team who can provide her with complementary areas of expertise. Ellen Wright Clayton, MD, JD, Professor of Craig-Weaver Professor of Pediatrics and Professor of Law, and co-Founder of the Center for Biomedical Ethics and Society at Vanderbilt University is her primary mentor and provide guidance on the ethical and policy issues in genomics. Wylie Burke, MD, PhD, Professor of Bioethics and Humanities at the University of Washington, will provide mentorship on the ethical and cultural issues in genomics and will provide guidance for engaging communities in research. Mary S. Dietrich, PhD, Professor of Statistics and Measurement in the Schools of Medicine (Biostatistics, Ingram Cancer Center, Psychiatry) and Nursing at Vanderbilt University will provide mentorship on conducting survey research and statistical analyses. With the enthusiastic support of her mentors, Center for Biomedical Ethics and Society, and institutional support, Dr. Garrison is well prepared to complete the training and studies in this proposal and develop into a successful academic investigator. Research This proposal aims to characterize the views and opinions of American Indian/Alaska Native/Native Hawaiian (AI/AN/NH) stakeholders, including tribal leaders, scientists, clinicians, and policy makers, on genetic research in order to develop guidelines, strategies, and policies for tribes to engage in ethically sound genetic research. Aim 1 will incorporate qualitative data through semi-structured interviews coupled with quantitative data obtained through surveys to provide a basis for tribal leaders and an Advisory Board to guide and shape policies that will reframe the debate about genetics and genomics. Aim 2 will bring a group of stakeholders together to deliberate, using the Delphi process, about priority areas requiring additional guidance for policy making. The results obtained will guide policy-making and the creation of guidelines for the ethically and culturally acceptable conduct and implementation of genomics research for tribes to consider for adoption. PUBLIC HEALTH RELEVANCE: This project will explore the ethical, social, and cultural issues of the American Indians in regards to genetic research. Engaging tribal leaders and relevant stakeholders such as scientists, clinicians, and policy makers on issues around genetic research will create a more complete understanding of these challenges and enable them to create policies that may permit greater participation by American Indians and their tribes.