ArticleGenetics in medicine : official journal of the American College of Medical Genetics2022
Precision medicine research with American Indian and Alaska Native communities: Results of a deliberative engagement with tribal leaders.
Article in Genetics in medicine : official journal of the American College of Medical Genetics, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 11 papers.
What it found
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The trial behind it
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Who cites it
11 citing papers in PubMed.
- Community Partnerships in Clinical Research: A Framework for Sustainability and Resilience.Clinical pharmacology and therapeutics · 2026Review
- Virtual deliberation on genetics research: report-out of key themes from Diné (Navajo) research & healthcare professionals.Journal of community genetics · 2026Article
- A workshop considering genetic research and data collection with American Indian and Alaska Native people outside of Tribal jurisdiction.Frontiers in genetics · 2026Article
- Trusted partners, community priorities, and data protections: requirements for precision medicine research with Alaska Native peoples.Journal of community genetics · 2025Article
- 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
- Consideration and Disclosure of Group Risks in Genomics and Other Data-Centric Research: Does the Common Rule Need Revision?The American journal of bioethics : AJOB · 2025Article
- Implementing community-engaged pharmacogenomics in Indigenous communities.Nature communications · 2024Article
- Assessing Facilitator Fidelity to Principles of Public Deliberation: Tutorial.JMIR formative research · 2023Article
- Beyond the Individual: Community-Centric Approaches to Increase Diversity in Biomedical Research.Clinical pharmacology and therapeutics · 2023Review
- Ethical Guidance in Human Paleogenomics: New and Ongoing Perspectives.Annual review of genomics and human genetics · 2022Review
- 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
Corrections and comments
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Authors and funding
8 authors.
Funding
Abstract
purposeAmid calls for greater diversity in precision medicine research, the perspectives of Indigenous people have been underexplored. Our goals were to understand tribal leaders' views regarding the potential benefits and risks of such research, explore its priority for their communities, and identify the policies and safeguards they consider essential. This article reports on the participants' perspectives regarding governance and policy, stewardship and sharing of information and biospecimens, and informed consent.
methodsAfter informal local dialogs with 21 tribal leaders, we convened a 2.5-day deliberation with tribal leaders (N = 10) in Anchorage, Alaska, in June 2019 using a combination of small group and plenary discussion, ranking, and voting exercises to explore the perspectives on precision medicine research.
resultsTribal sovereignty was central to participants' ideas about precision medicine research. Although views were generally positive, provided that the appropriate controls were in place, some kinds of research were deemed unacceptable, and the collection of certain biospecimens was rejected by some participants. Differences were observed regarding the acceptability of broad consent.
conclusionTribal leaders in this study were generally supportive of precision medicine research, with the caveat that tribal oversight is essential for the establishment of research repositories and the conduct of research involving Indigenous participants.
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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.