ArticleEnvironmental health perspectives2012
Conducting research with tribal communities: sovereignty, ethics, and data-sharing issues.
Article in Environmental health perspectives, 2012. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 84 papers, 4 of them syntheses that pooled it.
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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.
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Who cites it
84 citing papers in PubMed, 4 syntheses or guidelines pooled it.
- Measuring Indigenous Cultural Strengths: a Systematic Review of a Decade of Approaches.Prevention science : the official journal of the Society for Prevention Research · 2026Pooled it
- Potential research ethics violations against an indigenous tribe in Ecuador: a mixed methods approach.BMC medical ethics · 2020Pooled it
- The Role of the Nurse Scientist as a Knowledge Broker.Journal of nursing scholarship : an official publication of Sigma Theta Tau International Honor Society of Nursing · 2019Pooled it
- Seeking consent for research with indigenous communities: a systematic review.BMC medical ethics · 2016Pooled it
- "Keep up the messages, sometimes it was a lifesaver": Effects of cultural adaptation on a suicide prevention clinical trial in American Indian/Alaska Native communities.Behaviour research and therapy · 2023Trial
- Healthy Children, Strong Families 2: A randomized controlled trial of a healthy lifestyle intervention for American Indian families designed using community-based approaches.Clinical trials (London, England) · 2017Trial
- Employing Common Morality to Address Ethical Issues in Genetics Research With Indigenous People: The Ọmọlúàbí Ideology.American journal of biological anthropology · 2026Review
- A workshop considering genetic research and data collection with American Indian and Alaska Native people outside of Tribal jurisdiction.Frontiers in genetics · 2026Article
- Communicating Pollutants That Threaten Tribal Identities: PFAS Contamination in Local Fish and Shellfish.Science communication · 2025Article
- A systematic review of responsible stewardship of research and health data from Indigenous communities.NPJ digital medicine · 2025Article
- Responsible Governance of Tribal Public Health Data: Data Sharing Ethics and Common Challenges in the US Public Health System.Journal of medical Internet research · 2025Article
- Care-Seeking Action after Helicobacter pylori Testing among a High-Risk Indigenous Population: A Cross-Sectional Study Follow-up.The American journal of tropical medicine and hygiene · 2025Article
- Competing interests: digital health and indigenous data sovereignty.NPJ digital medicine · 2024Review
- Online toolkits for collaborative and inclusive global research in urban evolutionary ecology.Ecology and evolution · 2024Article
- Increased community engagement of Indigenous Peoples in dementia research leads to higher context relevance of results.Dementia (London, England) · 2024Review
- The ethical challenges of diversifying genomic data: A qualitative evidence synthesis.Cambridge prisms. Precision medicine · 2024Review
- Gaps and opportunities for measuring equity with the Translational Science Benefits Model: Recommendations from the Center for American Indian and Alaska Native Diabetes Translation Research.Journal of clinical and translational science · 2024Article
- Moving Forward with Reporting Back Individual Environmental Health Research Results.Environmental health perspectives · 2023Article
- Return of Individual Research Results: Participant Perspectives in a Longitudinal Community-Based Sample.Journal of empirical research on human research ethics : JERHRE · 2023Article
- Five recommendations for using large-scale publicly available data to advance health among American Indian peoples: the Adolescent Brain and Cognitive Development (ABCD) StudyNeuropsychopharmacology : official publication of the American College of Neuropsychopharmacology · 2023Review
24 more citing papers are in PubMed but not listed here.
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
backgroundWhen conducting research with American Indian tribes, informed consent beyond conventional institutional review board (IRB) review is needed because of the potential for adverse consequences at a community or governmental level that are unrecognized by academic researchers.
objectivesIn this article, we review sovereignty, research ethics, and data-sharing considerations when doing community-based participatory health-related or natural-resource-related research with American Indian nations and present a model material and data-sharing agreement that meets tribal and university requirements. DISCUSSION: Only tribal nations themselves can identify potential adverse outcomes, and they can do this only if they understand the assumptions and methods of the proposed research. Tribes must be truly equal partners in study design, data collection, interpretation, and publication. Advances in protection of intellectual property rights (IPR) are also applicable to IRB reviews, as are principles of sovereignty and indigenous rights, all of which affect data ownership and control.
conclusionsAcademic researchers engaged in tribal projects should become familiar with all three areas: sovereignty, ethics and informed consent, and IPR. We recommend developing an agreement with tribal partners that reflects both health-related IRB and natural-resource-related IPR considerations.
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