ReviewFrontiers in public health2021
Empowering Equitable Data Use Partnerships and Indigenous Data Sovereignties Amid Pandemic Genomics.
Review in Frontiers in public health, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 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
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
12 citing papers in PubMed.
- Evaluating the participatory processes within the OECD PaRIS project in Saskatchewan: lessons learned about recruitment and engagement.BMC primary care · 2026Article
- Addressing pancreatic cancer disparities in Oregon's Native American population via tribally responsive research systems with the confederated tribes of warm springs.Cancer causes & control : CCC · 2026Article
- Virtual deliberation on genetics research: report-out of key themes from Diné (Navajo) research & healthcare professionals.Journal of community genetics · 2026Article
- Health technology design considerations specific to Indigenous Data Sovereignty and implementation science.Frontiers in health services · 2026Article
- A workshop considering genetic research and data collection with American Indian and Alaska Native people outside of Tribal jurisdiction.Frontiers in genetics · 2026Article
- A systematic review of responsible stewardship of research and health data from Indigenous communities.NPJ digital medicine · 2025Article
- Can Open Science Advance Health Justice? Genomic Research Dissemination in the Evolving Data-Sharing Landscape.The Hastings Center report · 2024Article
- Data sharing ethics toolkit: The Human Cell Atlas.Nature communications · 2024Review
- Genomic Data Sharing: Navigating The Ethical Issues In Collaborative Research Relationships Between The Global North-South.African journal of bioethics · 2024Article
- Data sharing in the context of community-engaged research partnerships.Social science & medicine (1982) · 2023Article
- Is there a way to reduce the inequity in variant interpretation on the basis of ancestry?American journal of human genetics · 2022Article
- Ethical microbiome research with Indigenous communities.Nature microbiology · 2022Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
8 authors.
Funding
Abstract
The COVID-19 pandemic has inequitably impacted Indigenous communities in the United States. In this emergency state that highlighted existing inadequacies in US government and tribal public health infrastructures, many tribal nations contracted with commercial entities and other organization types to conduct rapid diagnostic and antibody testing, often based on proprietary technologies specific to the novel pathogen. They also partnered with public-private enterprises on clinical trials to further the development of vaccines. Indigenous people contributed biological samples for assessment and, in many cases, broadly consented for indefinite use for future genomics research. A concern is that the need for crisis aid may have placed Indigenous communities in a position to forego critical review of data use agreements by tribal research governances. In effect, tribal nations were placed in the unenviable position of trading short-term public health assistance for long-term, unrestricted access to Indigenous genomes that may disempower future tribal sovereignties over community members' data. Diagnostic testing, specimen collection, and vaccine research is ongoing; thus, our aim is to outline pathways to trust that center current and future equitable relationship-building between tribal entities and public-private interests. These pathways can be utilized to increase Indigenous communities' trust of external partners and share understanding of expectations for and execution of data protections. We discuss how to navigate genomic-based data use agreements in the context of pathogen genomics. While we focus on US tribal nations, Indigenous genomic data sovereignties relate to global Indigenous nations regardless of colonial government recognition.
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Identifiers
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.