ArticleFrontiers in genetics2022
Extending the CARE Principles from tribal research policies to benefit sharing in genomic research.
Article in Frontiers in genetics, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 20 papers.
What it found
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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.
The trial behind it
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Who cites it
20 citing papers in PubMed, 37 citations in OpenAlex.
- From equity to solidarity: how care and relationality transform the debate on justice in genomics.Journal of community genetics · 2026Article
- Development of a Blockchain-Based Platform to Enable Indigenous Data Sovereignty and Shared Research Participation With Indigenous Communities: Technology Prototyping and Community Engagement Study.Journal of medical Internet research · 2026Article
- A primary care pharmacogenetic precision medicine pilot based on specific Māori tribal ethical frameworks and principles.Journal of community genetics · 2026Article
- Translating multi-omics into healthcare: requisites for scalable and equitable implementation.Human genomics · 2026Review
- "If It Don't Talk, It's Not Whakapapa Data": Conceptualising Whakapapa Data in a Digital Age.Journal of the Royal Society of New Zealand · 2026Article
- Integrating biological and environmental data to solve key scientific and societal challenges.Bioscience · 2026Article
- Health technology design considerations specific to Indigenous Data Sovereignty and implementation science.Frontiers in health services · 2026Article
- The genetic basis of human height.Nature reviews. Genetics · 2025Review
- A systematic review of responsible stewardship of research and health data from Indigenous communities.NPJ digital medicine · 2025Article
- Trusted partners, community priorities, and data protections: requirements for precision medicine research with Alaska Native peoples.Journal of community genetics · 2025Article
- Why Revise When We Should Reconcile?The American journal of bioethics : AJOB · 2025Article
- Community-engaged artificial intelligence: an upstream, participatory design, development, testing, validation, use and monitoring framework for artificial intelligence and machine learning models in the Alaska Tribal Health System.Frontiers in artificial intelligence · 2025Article
- Using positionality and reflexivity to support equity in partnership-driven research.Conservation biology : the journal of the Society for Conservation Biology · 2024Article
- Data sharing ethics toolkit: The Human Cell Atlas.Nature communications · 2024Review
- Use of Cognitive Interviews in the Development of a Survey Assessing American Indian and Alaska Native Adult Perspectives on Genetics and Biological Specimens.International journal of environmental research and public health · 2024Article
- "'Keep the Fire Burning': Applications and Culturally Congruent Research Strategies for Research on Sexual and Reproductive Health With Indigenous Women".Journal of participatory research methods · 2024Article
- Applying the 'CARE Principles for Indigenous Data Governance' to ecology and biodiversity research.Nature ecology & evolution · 2023Article
- Genetic research with Indigenous Peoples: perspectives on governance and oversight in the US.Frontiers in research metrics and analytics · 2023Article
- Indigenous Peoples and research: self-determination in research governance.Frontiers in research metrics and analytics · 2023Article
- Indigenous Peoples' Rights in Data: a contribution toward Indigenous Research Sovereignty.Frontiers in research metrics and analytics · 2023Article
Corrections and comments
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Authors and funding
9 authors at 5 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Indigenous Peoples have historically been targets of extractive research that has led to little to no benefit. In genomics, such research not only exposes communities to harms and risks of misuse, but also deprives such communities of potential benefits. Tribes in the US have been exercising their sovereignty to limit this extractive practice by adopting laws and policies to govern research on their territories and with their citizens. Federally and state recognized tribes are in the strongest position to assert research oversight. Other tribes lack the same authority, given that federal and state governments do not recognize their rights to regulate research, resulting in varying levels of oversight by tribes. These governance measures establish collective protections absent from the US federal government's research oversight infrastructure, while setting expectations regarding benefits to tribes as political collectives. Using a legal epidemiology approach, the paper discusses findings from a review of Tribal research legislation, policy, and administrative materials from 26 tribes in the US. The discussion specifies issues viewed by tribes as facilitators and barriers to securing benefits from research for their nations and members/citizens, and describes preemptive and mitigating strategies pursued by tribes in response. These strategies are set within the framing of the CARE Principles for Indigenous Data Governance (Collective Benefit, Authority to Control, Responsibility, Ethics), a set of standards developed to ensure that decisions made about data pertaining to Indigenous communities at the individual and tribal levels are responsive to their values and collective interests. Our findings illustrate gaps to address for benefit sharing and a need to strengthen Responsibility and Ethics in tribal research governance.
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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.