ArticleFrontiers in genetics2022
Using Indigenous Standards to Implement the CARE Principles: Setting Expectations through Tribal Research Codes.
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 26 papers.
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Who cites it
26 citing papers in PubMed.
- Reclaiming Data, Restoring Health: The Indigenous Biomedical Data Science Renaissance.Annual review of biomedical data science · 2026Review
- Crystallography in Open Science and its open educational resources.Acta crystallographica. Section A, Foundations and advances · 2026Article
- Cultural and contextual relevance of the Indigenous data in the Canadian longitudinal study on aging.Canadian journal of public health = Revue canadienne de sante publique · 2026Article
- A reservation-based clinical trial on inflammatory biomarkers in American Indian/Alaska Native cancer patients: Rationale and design of the Adaptive Prehab Approaches in Cancer Healing and Education (APACHE) Program.Contemporary clinical trials · 2026Article
- Integrating biological and environmental data to solve key scientific and societal challenges.Bioscience · 2026Article
- A workshop considering genetic research and data collection with American Indian and Alaska Native people outside of Tribal jurisdiction.Frontiers in genetics · 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
- Protecting Repositories of Indigenous Traditional Ecological Knowledges: A Health-Focused Scoping Review.International journal of environmental research and public health · 2025Article
- Dying in Darkness: Deviations From Data Sharing Ethics in the US Public Health System and the Data Genocide of American Indian and Alaska Native Communities.Journal of medical Internet research · 2025Article
- Guidance for sharing computational models of neural stimulation: from project planning to publication.Journal of neural engineering · 2025Review
- Extending the CARE Principles: managing data for vulnerable communities in wartime and humanitarian crises.Scientific data · 2025Article
- Arthropods are kin: Operationalizing Indigenous data sovereignty to respectfully utilize genomic data from Indigenous lands.Molecular ecology resources · 2025Article
- A manifesto for a globally diverse, equitable, and inclusive open science.Communications psychology · 2025Review
- Datagraphy: toward a systematic approach to dataset discovery.GigaScience · 2025Article
- Ten "simple" rules for non-Indigenous researchers engaging Indigenous communities in Arctic research.PLoS computational biology · 2024Article
- Increased community engagement of Indigenous Peoples in dementia research leads to higher context relevance of results.Dementia (London, England) · 2024Review
- Open Science Practices in Psychiatric Genetics: A Primer.Biological psychiatry global open science · 2024Review
- Understanding Resilience and Mental Well-Being in Southwest Indigenous Nations and the Impact of COVID-19: Protocol for a Multimethods Study.JMIR research protocols · 2023Article
Corrections and comments
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Authors and funding
7 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Biomedical data are now organized in large-scale databases allowing researchers worldwide to access and utilize the data for new projects. As new technologies generate even larger amounts of data, data governance and data management are becoming pressing challenges. The FAIR principles (Findable, Accessible, Interoperable, and Reusable) were developed to facilitate data sharing. However, the Indigenous Data Sovereignty movement advocates for greater Indigenous control and oversight in order to share data on Indigenous Peoples' terms. This is especially true in the context of genetic research where Indigenous Peoples historically have been unethically exploited in the name of science. This article outlines the relationship between sovereignty and ethics in the context of data to describe the collective rights that Indigenous Peoples assert to increase control over their biomedical data. Then drawing on the CARE Principles for Indigenous Data Governance (Collective benefit, Authority to control, Responsibility, and Ethics), we explore how standards already set by Native nations in the United States, such as tribal research codes, provide direction for implementation of the CARE Principles to complement FAIR. A broader approach to policy and procedure regarding tribal participation in biomedical research is required and we make recommendations for tribes, institutions, and ethical practice.
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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.