Genetic research within Indigenous communities: Engagement opportunities and pathways forward.

Autor:	Barton KS; Biostatistics Epidemiology and Analytics for Research (BEAR) Core, Seattle Children's Research Institute, Seattle, WA., Porter KM; Treuman Katz Center for Pediatric Bioethics and Palliative Care, Seattle Children's Research Institute, Seattle, WA., Mai T; Institute for Public Health Genetics, University of Washington School of Medicine, Seattle, WA., Claw KG; Department of Biomedical Informatics, Colorado Center for Personalized Medicine, University of Colorado Anschutz Medical Campus, Aurora, CO., Hiratsuka VY; Center for Human Development, College of Health, University of Alaska Anchorage, Anchorage, AK; Southcentral Foundation, Anchorage, AK., Carroll SR; Mel and Enid Zuckerman College of Public Health, University of Arizona, Tucson, AZ; Native Nations Institute, Udall Center for Studies in Public Policy, University of Arizona, Tucson, AZ., Burke W; Department of Bioethics and Humanities, University of Washington School of Medicine, Seattle, WA., Garrison NA; Institute for Society and Genetics, University of California, Los Angeles, Los Angeles, CA; Institute for Precision Health, David Geffen School of Medicine, University of California, Los Angeles, Los Angeles, CA; Division of General Internal Medicine and Health Services Research, David Geffen School of Medicine, University of California, Los Angeles, Los Angeles, CA. Electronic address: nanibaa@socgen.ucla.edu.
Jazyk:	angličtina
Zdroj:	Genetics in medicine : official journal of the American College of Medical Genetics [Genet Med] 2024 Jul; Vol. 26 (7), pp. 101158. Date of Electronic Publication: 2024 Apr 30.
DOI:	10.1016/j.gim.2024.101158
Abstrakt:	Purpose: Against a historical backdrop of researchers who violated trust through lack of benefit sharing, transparency, and engagement, efforts are underway to develop better approaches for genetic and genomic research with Indigenous communities. To increase engagement, there is a need to understand factors that affect researcher and community collaborations. This study aimed to understand the barriers, challenges, and facilitators of Indigenous Peoples in the United States participating in genetic research. Methods: We conducted 42 semistructured interviews with Tribal leaders, clinicians, researchers, policy makers, and Tribal research review board members across the United States to explore perceived risks, benefits, barriers, and facilitators of genetic research participation. Results: Participants, identifying as Indigenous (88%) or non-Indigenous allies (12%), described their concerns, hesitancy, and fears about genetic research, as well as the roles of trust, transparency, and respect for culture in facilitating partnerships. Previous harms-such as sample and data misuse, stigmatization, or misrepresentation by researchers-revealed strategies for building trust to create more equitable and reciprocal research partnerships. Conclusion: Participants in this study offered strategies for increasing genetic research engagement. The pathway forward should foster transparent research policies and practices to facilitate informed research that supports the needs and priorities of participants, communities, and researchers. Competing Interests: Conflict of Interest The authors declare no conflicts of interest. (Copyright © 2024 The Authors. Published by Elsevier Inc. All rights reserved.)
Databáze:	MEDLINE
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