SynthesisJournal of the American Medical Informatics Association : JAMIA2020
A systematic literature review of Native American and Pacific Islanders' perspectives on health data privacy in the United States.
Synthesis in Journal of the American Medical Informatics Association : JAMIA, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers, 1 of them a synthesis 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
12 citing papers in PubMed, 1 synthesis or guideline pooled it, 26 citations in OpenAlex.
- A Systematic Review Exploring Empirical Pharmacogenomics Research Within Global Indigenous Populations.Molecular genetics & genomic medicine · 2024Pooled it
- Planning for your CANOE (Circumspect Awareness and Navigation of Outcomes and Expectations) journey in community-engaged research with Indigenous communities.The Lancet. Global health · 2025Review
- The European Health Data Space: an opportunity to strengthen citizen rights and engage citizens in health data governance.Frontiers in medicine · 2025Article
- Article
- Determining the connectivity of tribal communities to wastewater treatment facilities for use in environmental contamination and exposure assessments by wastewater-based surveillance.Journal of exposure science & environmental epidemiology · 2024Article
- Codesigning a community-based participatory research project to assess tribal perspectives on privacy and health data sharing: A report from the Strong Heart Study.Journal of the American Medical Informatics Association : JAMIA · 2022Article
- Using Indigenous Standards to Implement the CARE Principles: Setting Expectations through Tribal Research Codes.Frontiers in genetics · 2022Article
- The commercialization of biospecimens from Indigenous Peoples: A scoping review of benefit-sharing.Frontiers in medicine · 2022Article
- The Impact of Communicating Uncertainty on Public Responses to Precision Medicine Research.Annals of behavioral medicine : a publication of the Society of Behavioral Medicine · 2021Article
- Expanded Ethical Principles for Research Partnership and Transdisciplinary Natural Resource Management Science.Environmental management · 2021Article
- Multicomponent Informed Consent with Marshallese Participants.Journal of empirical research on human research ethics : JERHRE · 2021Article
- Complicated legacies: The human genome at 20.Science (New York, N.Y.) · 2021Article
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 at 5 institutions in 1 country.
Funding
Abstract
backgroundPrivacy-related concerns can prevent equitable participation in health research by US Indigenous communities. However, studies focused on these communities' views regarding health data privacy, including systematic reviews, are lacking.
methodsWe conducted a systematic literature review analyzing empirical, US-based studies involving American Indian/Alaska Native (AI/AN) and Native Hawaiian or other Pacific Islander (NHPI) perspectives on health data privacy, which we define as the practice of maintaining the security and confidentiality of an individual's personal health records and/or biological samples (including data derived from biological specimens, such as personal genetic information), as well as the secure and approved use of those data.
resultsTwenty-one studies involving 3234 AI/AN and NHPI participants were eligible for review. The results of this review suggest that concerns about the privacy of health data are both prevalent and complex in AI/AN and NHPI communities. Many respondents raised concerns about the potential for misuse of their health data, including discrimination or stigma, confidentiality breaches, and undesirable or unknown uses of biological specimens.
conclusionsParticipants cited a variety of individual and community-level concerns about the privacy of their health data, and indicated that these deter their willingness to participate in health research. Future investigations should explore in more depth which health data privacy concerns are most salient to specific AI/AN and NHPI communities, and identify the practices that will make the collection and use of health data more trustworthy and transparent for participants.
Indexed as
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.