ArticleAJOB empirical bioethics
Deliberations with American Indian and Alaska Native People about the Ethics of Genomics: An Adapted Model of Deliberation Used with Three Tribal Communities in the United States.
Article in AJOB empirical bioethics. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 papers.
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Who cites it
15 citing papers in PubMed.
- Virtual deliberation on genetics research: report-out of key themes from Diné (Navajo) research & healthcare professionals.Journal of community genetics · 2026Article
- My call for community-engaged genetic research into cerebral palsy.Nature genetics · 2026Article
- The Effectiveness of Adaptations for Online Remote Public Deliberation Across Three Continents: Mixed Methods Study.Journal of participatory medicine · 2025Article
- Bridging community-engaged research and implementation science methods to advance public health practice.Bundesgesundheitsblatt, Gesundheitsforschung, Gesundheitsschutz · 2025Review
- A 4-Site Public Deliberation Project on the Acceptability of Youth Self-Consent in Biomedical HIV Prevention Trials: Assessment of Facilitator Fidelity to Key Principles.JMIR formative research · 2025Article
- Ethical, Legal, and Social Implications of Gene-Environment Interaction Research.Genetic epidemiology · 2025Review
- Culturally safe and ethical biomarker and genomic research with Indigenous peoples-a scoping review.BMC global and public health · 2024Article
- Why community consultation matters in genomic research benefit-sharing models.Genome research · 2024Article
- Variant reclassification and recontact research: A scoping review.Genetics in medicine open · 2024Article
- Community Engagement in Precision Medicine Research: Organizational Practices and Their Impacts for Equity.AJOB empirical bioethics · 2023Article
- Tribal Deliberations about Precision Medicine Research: Addressing Diversity and Inequity in Democratic Deliberation Design and Evaluation.Journal of empirical research on human research ethics : JERHRE · 2022Article
- Precision medicine research with American Indian and Alaska Native communities: Results of a deliberative engagement with tribal leaders.Genetics in medicine : official journal of the American College of Medical Genetics · 2022Article
- Review
- Testing a deliberative democracy method with citizens of African ancestry to weigh pros and cons of targeted screening for hereditary breast and ovarian cancer risk.Frontiers in public health · 2022Article
- Being in Good Community: Engagement in Support of Indigenous Sovereignty.The American journal of bioethics : AJOB · 2021Article
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Authors and funding
14 authors.
Funding
Abstract
backgroundThis paper describes the design, implementation, and process outcomes from three public deliberations held in three tribal communities. Although increasingly used around the globe to address collective challenges, our study is among the first to adapt public deliberation for use with exclusively Indigenous populations. In question was how to design deliberations for tribal communities and whether this adapted model would achieve key deliberative goals and be well received.
methodsWe adapted democratic deliberation, an approach to stakeholder engagement, for use with three tribal communities to respect tribal values and customs. Public deliberation convenes people from diverse backgrounds in reasoned reflection and dialogue in search of collective solutions. The deliberation planning process and design were informed by frameworks of enclave deliberation and community-based participatory research, which share key egalitarian values. The deliberations were collaboratively designed with tribal leadership and extensive partner input and involvement in the deliberations. Each deliberation posed different, locally relevant questions about genomic research, but used the same deliberation structure and measures to gauge the quality and experience of deliberation.
resultsA total of 52 individuals participated in the deliberations across all three sites. Deliberants were balanced in gender, spanned decades in age, and were diverse in educational attainment and exposure to health research. Overall, the deliberations were positively evaluated. Participant perceptions and external observer datasets depict three deliberations that offered intensive conversation experiences in which participants learned from one another, reported feeling respected and connected to one another, and endorsed this intensive form of engagement.
conclusionThe adapted deliberations achieved key deliberative goals and were generally well received. Limitations of the study are described.
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