Tribal Deliberations about Precision Medicine Research: Addressing Diversity and Inequity in Democratic Deliberation Design and Evaluation

Erika Blacksher, Susan Brown Trinidad, R. Brian Woodbury, Scarlett E. Hopkins, Erica L. Woodahl, Bert B. Boyer, Wylie Burke, Vanessa Hiratsuka

Research output: Contribution to journalArticlepeer-review

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.

Original languageEnglish (US)
Pages (from-to)304-316
Number of pages13
JournalJournal of Empirical Research on Human Research Ethics
Volume17
Issue number3
DOIs
StatePublished - Jul 2022

Keywords

  • American Indian and Alaska Native
  • community engagement
  • community-based participatory research
  • deliberative methods
  • democratic deliberation
  • ethics
  • precision medicine research

ASJC Scopus subject areas

  • Social Psychology
  • Education
  • Communication

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