Bronstein Lecture: Nanibaa' Garrison, PhD

12:00pm - 1:00pm • Hybrid: RCH B102AB, Richards Bldg., 3700 Hamilton Walk (and virtual via Zoom)

2023-10-11 12:00:00 2023-10-11 13:00:00 America/New_York Bronstein Lecture: Nanibaa' Garrison, PhD Pathways and Policies for Indigenous Data Sovereignty in Genetic Research Nanibaa' Garrison, PhD Associate Professor Institute for Society & Genetics Institute for Precision Health UCLA Against a historical backdrop of distrust of researchers stemming from perceived lack of benefit, transparency, and engagement, efforts are underway to develop better models for genetic and genomic research with Indigenous Peoples. To increase engagement, there is a need to identify and address factors that impact collaborations between researchers and communities as well as understand federal and Tribal Nation policies governing research. This talk will describe perspectives, pathways, and policies by first describing results from qualitative research with Indigenous leaders, health professionals and policy makers to identify barriers and facilitators to participation in genetic and genomic research and end with a discussion of the CARE Principles for Indigenous Data Governance as a tool to address gaps in existing policies, research codes, and formal guidance. Addressing the concerns and gaps may better enable researchers to build trust, transparency, and respect for culture to facilitate more equitable and reciprocal research partnerships. 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. 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 Indigenous peoples to develop policies and guidance regarding genetic and genomic research. She is a member of the US Indigenous Data Sovereignty Network, the Navajo Nation Human Research Review Board, and co-director of both the Summer internship for INdigenous peoples in Genomics (SING) and the Precision health and genomics: Indigenous Mentoring and Ethics (PrIME) faculty program. Lunch is provided. Streaming available via Zoom. Hybrid: RCH B102AB, Richards Bldg., 3700 Hamilton Walk (and virtual via Zoom) Penn Medical Ethics

Against a historical backdrop of distrust of researchers stemming from perceived lack of benefit, transparency, and engagement, efforts are underway to develop better models for genetic and genomic research with Indigenous Peoples. To increase engagement, there is a need to identify and address factors that impact collaborations between researchers and communities as well as understand federal and Tribal Nation policies governing research. This talk will describe perspectives, pathways, and policies by first describing results from qualitative research with Indigenous leaders, health professionals and policy makers to identify barriers and facilitators to participation in genetic and genomic research and end with a discussion of the CARE Principles for Indigenous Data Governance as a tool to address gaps in existing policies, research codes, and formal guidance. Addressing the concerns and gaps may better enable researchers to build trust, transparency, and respect for culture to facilitate more equitable and reciprocal research partnerships.

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. 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 Indigenous peoples to develop policies and guidance regarding genetic and genomic research. She is a member of the US Indigenous Data Sovereignty Network, the Navajo Nation Human Research Review Board, and co-director of both the Summer internship for INdigenous peoples in Genomics (SING) and the Precision health and genomics: Indigenous Mentoring and Ethics (PrIME) faculty program.