ArticlePloS one2020
An Alaska Native community's views on genetic research, testing, and return of results: Results from a public deliberation.
Article in PloS one, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 22 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
22 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Return of individual research results from genomic research: A systematic review of stakeholder perspectives.PloS one · 2021Pooled it
- Salutogenomics: embracing the full spectrum of human health.Trends in genetics : TIG · 2026Review
- Virtual deliberation on genetics research: report-out of key themes from Diné (Navajo) research & healthcare professionals.Journal of community genetics · 2026Article
- 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
- Qualitative genomic research with Indigenous peoples: a scoping review of participatory practice.BMJ global health · 2024Article
- Return of Individual Research Results: Participant Perspectives in a Longitudinal Community-Based Sample.Journal of empirical research on human research ethics : JERHRE · 2023Article
- Do genomic passports leave us more vulnerable or less vulnerable? Perspectives from an online citizen engagement.Humanities & social sciences communications · 2023Article
- Exploring Potential for a Personalized Medicine Approach to Smoking Cessation With an American Indian Tribe.Nicotine & tobacco research : official journal of the Society for Research on Nicotine and Tobacco · 2023Article
- Genetic research with Indigenous Peoples: perspectives on governance and oversight in the US.Frontiers in research metrics and analytics · 2023Article
- LGBTQ+ Perspectives on Conducting Genomic Research on Sexual Orientation and Gender Identity.Behavior genetics · 2022Article
- 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
- A Framework for Promoting Diversity, Equity, and Inclusion in Genetics and Genomics Research.JAMA health forum · 2022Article
- Values and Practices to Strengthen Genetic Research Partnerships with Indigenous Communities.Progress in community health partnerships : research, education, and action · 2022Article
- The commercialization of biospecimens from Indigenous Peoples: A scoping review of benefit-sharing.Frontiers in medicine · 2022Article
- Extending Research Protections to Tribal Communities.The American journal of bioethics : AJOB · 2021Article
- Deliberative Forums to Bolster Tribal Self-Determination.The American journal of bioethics : AJOB · 2021Article
- Being in Good Community: Engagement in Support of Indigenous Sovereignty.The American journal of bioethics : AJOB · 2021Article
- Perspectives on Genetic Research: Results From a Survey of Navajo Community Members.Frontiers in genetics · 2021Article
- Power Sharing, Capacity Building, and Evolving Roles in ELSI: The Center for the Ethics of Indigenous Genomic Research.Collaborations (Coral Gables, Fla.) · 2020Article
- 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.AJOB empirical bioethicsArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors.
Funding
Abstract
As genetic testing technology advances, genetic testing will move into standard practice in the primary care setting. Genetic research, testing, and return of results are complex topics that require input from Alaska Native and American Indian (ANAI) communities as policies are developed for implementation. This study employed a day and half long public deliberation with ANAI primary care patients to elicit value-laden views of genetic research, testing, and return of results. Participants emphasized the need for a balance between the potential for genetics research, testing, and return of results to empower individuals and improve health with the potential to expose individuals and communities to privacy breaches, discrimination, and emotional harms. Public deliberation was well received by this group of participants and elicited rich discussion on the complex topic of genetic research, testing, and return of results.
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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.