ArticleEthnicity & disease2019
Access and Management: Indigenous Perspectives on Genomic Data Sharing.
Article in Ethnicity & disease, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 33 papers, 3 of them syntheses 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
33 citing papers in PubMed, 3 syntheses or guidelines pooled it.
- A Systematic Review Exploring Empirical Pharmacogenomics Research Within Global Indigenous Populations.Molecular genetics & genomic medicine · 2024Pooled it
- Indigenous and Tribal Peoples Data Governance in Health Research: A Systematic Review.International journal of environmental research and public health · 2021Pooled it
- A systematic literature review of Native American and Pacific Islanders' perspectives on health data privacy in the United States.Journal of the American Medical Informatics Association : JAMIA · 2020Pooled it
- Considerations for biobanking of nonhuman genome data connected to Indigenous Peoples and lands.Conservation biology : the journal of the Society for Conservation Biology · 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
- Navigating data sharing in research.American journal of human genetics · 2026Review
- Cultural, ethical, legal, and social considerations in genomics research with Indigenous Peoples: A scoping review.European journal of human genetics : EJHG · 2026Article
- Health technology design considerations specific to Indigenous Data Sovereignty and implementation science.Frontiers in health services · 2026Article
- A systematic review of responsible stewardship of research and health data from Indigenous communities.NPJ digital medicine · 2025Article
- The Landmark Series: Surgical Oncology Care in Native Americans-The Indian Health Service.Annals of surgical oncology · 2025Review
- Culturally safe and ethical biomarker and genomic research with Indigenous peoples-a scoping review.BMC global and public health · 2024Article
- 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
- The ethical challenges of diversifying genomic data: A qualitative evidence synthesis.Cambridge prisms. Precision medicine · 2024Review
- Precision health equity for racialized communities.International journal for equity in health · 2023Review
- Return of Individual Research Results: Participant Perspectives in a Longitudinal Community-Based Sample.Journal of empirical research on human research ethics : JERHRE · 2023Article
- Patients' and Members of the Public's Wishes Regarding Transparency in the Context of Secondary Use of Health Data: Scoping Review.Journal of medical Internet research · 2023Article
- Context matters in genomic data sharing: a qualitative investigation into responses from the Australian public.BMC medical genomics · 2023Article
- A review of ancestrality and admixture in Latin America and the caribbean focusing on native American and African descendant populations.Frontiers in genetics · 2023Review
- Genetic research with Indigenous Peoples: perspectives on governance and oversight in the US.Frontiers in research metrics and analytics · 2023Article
- The ELSI Virtual Forum, 30 Years of the Genome: Integrating and Applying ELSI Research.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2023Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors.
Funding
Abstract
As genomic researchers are encouraged to engage in broad genomic data sharing, American Indian/Alaska Native/Native Hawaiian (AI/AN/NH) leaders have raised questions about ownership of data and biospecimens and concerns over emerging challenges and potential threats to tribal sovereignty. Using a community-engaged research approach, we conducted 42 semi-structured interviews with tribal leaders, clinicians, researchers, policy makers, and tribal research review board members about their perspectives on ethical issues related to genetics in AI/AN/NH communities. We report findings related to perspectives on genetic research, data sharing, and envisioning stronger oversight and management of data. In particular, participants voiced concerns about different models of data sharing, infrastructure and logistics for housing data, and who should have authority to grant access to data. The results will ultimately guide policy-making and the creation of guidelines and new strategies for tribes to drive the research agenda and promote ethically and culturally appropriate research.
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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.