DNA as a Communal Good Implications for Informed Consent, DNA Privacy
Speaker Krystal Tsosie and respondent Lee Bitsoi
Speaker Krystal Tsosie and respondent Lee Bitsoi
Speaker Keolu Fox and respondent Lee Bitsoi
Speaker Nanibaa’ Garrison and respondent Lee Bitsoi
Speakers Krystal Tsosie, Keolu Fox, and Nanibaa’ Garrison, and respondent Lee Bitsoi
This session was hosted as part of the 2021 AAAS Annual Meeting, “Understanding Dynamic Ecosystems.”
Confronting challenges in public health and genetics requires broader and more inclusive societal engagement, which necessitates the inclusion of communities that have traditionally been left out of the conversation. Many Native American tribes and other Indigenous communities across North America have centuries of Indigenous knowledge of sustainable practices in health care and governments. However, disparities are present in public health programs because of a long history of exploitation and extraction, in which marginalized people have had little agency and seen few or no benefits of such research. These programs also lack the vision of treating the whole person (which includes the scientific, spiritual, and cultural aspects of the person and the communities they are embedded in).
This symposium explored active research and engagement projects led or co-led by Native American and Indigenous scholars working in diverse ethical, scientific, and public health disciplines. It highlights the importance of bringing diverse voices in conversation with scientific research and public health initiatives. Each speaker integrates Indigenous knowledge within their respective research ecosystems of culture, policy and practice for the purpose of increasing the diversity of worldviews is instrumental in having healthy communities.
Krystal Tsosie (Diné/Navajo), MPH, MA, is currently completing an interdisciplinary PhD in Genomics and Health Disparities at Vanderbilt University. She advocates strongly for genomic and data sovereignty and is a co-founder of the first Indigenous-led biobank for tribes in South Dakota, called the Native BioData Consortium. She has provided commentary on issues related to DNA, gene editing, politics, and identity in a variety of media outlets including NPR, PBS NOVA, NY Times, Boston Globe, and others.
Keolu Fox, PhD, is a Kānaka Maoli (Native Hawaiian) Assistant Professor at the University of California, San Diego, where he is affiliated with the Department of Anthropology, the Global Health Program, the Halıcıoğlu Data Science Institute, the Climate Action Lab, and the Indigenous Futures Lab. His research interests include genome sequencing technology, genome engineering, point-of-care technology development and Indigenizing biomedical research.
Nanibaa’ Garrison (Navajo), Ph.D. is an Associate Professor at the University of California, Los Angeles. She has appointments in the Institute for Society and Genetics, the Institute for Precision Health, and the Division of General Internal Medicine & Health Services Research. She is a teaching faculty for the UCLA genetic counseling master’s program. Her research focuses on the ethical, social, and cultural implications of genetic and genomic research in Indigenous communities. Using community-based research approaches, she engages with tribal communities to develop policies and guidance for tribes.
LeManuel Lee Bitsóí (Diné/Navajo), EdD, is a critical ethnographer and bioethicist who specializes in guiding institutions and organizations to become more diverse, equitable and inclusive for equity seeking students and scholars. Dr. Bitsóí currently serves in a joint appointment as Associate Vice President for Diversity Affairs and Special Advisor to the President for Indigenous Affairs at Fort Lewis College. He has served in administrative and faculty positions at Harvard University, Dartmouth College, Georgetown University, Rush University and Stony Brook University. In addition, Dr. Bitsóí serves on several national boards and associations, including the National Advisory Council for the National Conference on Race and Ethnicity (NCORE), the National Research Advisory Council for the U.S. Department of Veterans Affairs and the Native American Affairs Committee for the Society for Advancement of Chicanos/Hispanics and Native Americans in Science (SACNAS).