| Literature DB >> 35225705 |
Erika Blacksher1, Susan Brown Trinidad1, R Brian Woodbury2, Scarlett E Hopkins3, Erica L Woodahl4, Bert B Boyer3, Wylie Burke1, Vanessa Hiratsuka5.
Abstract
Deliberative democratic engagement is used around the globe to gather informed public input on contentious collective questions. Yet, rarely has it been used to convene individuals exclusively from Indigenous communities. The relative novelty of using this approach to engage tribal communities and concerns about diversity and inequities raise important methodological questions. We describe the design and quality outcomes for a 2.5-day deliberation that elicited views of American Indian and Alaska Native (AIAN) leaders about the potential value and ethical conduct of precision medicine research (PMR), an emerging approach to research that investigates the health effects of individual genetic variation in tandem with variation in health-relevant practices, social determinants, and environmental exposures. The event met key goals, such as relationship and rapport formation, cross-site learning, equality of opportunity to participate, and respect among participants in the context of disagreement.Entities:
Keywords: American Indian and Alaska Native; community engagement; community-based participatory research; deliberative methods; democratic deliberation; ethics; precision medicine research
Mesh:
Year: 2022 PMID: 35225705 PMCID: PMC9173705 DOI: 10.1177/15562646221081267
Source DB: PubMed Journal: J Empir Res Hum Res Ethics ISSN: 1556-2646 Impact factor: 1.978