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Cited by 30Ethics in Clinical ResearchIndigenous Health, Education, and RightsThoreau and American Literature

A Systematic Literature Review of Native American and Pacific Islanders' Perspectives on Health Data Privacy in the United States

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Taitingfong, Riley, Bloss, Cinnamon S, Triplett, Cynthia, Cakici, Julie, Garrison, Nanibaa’, Cole, Shelley, Stoner, Julie A, Ohno-Machado, Lucila·2020·Journal of the American Medical Informatics Association
DOI 10.1093/jamia/ocaa235PMC PMC7727344
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Abstract

Background: Privacy-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. Methods: We 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. Results: Twenty-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. Conclusions: Participants 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.

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  • Indigenous individuals' concerns about privacy and confidentiality extend to promotion of tribal rights to control data and protection of collective tribal confidentiality and privacy in data and research.

    “Indigenous individuals’ concerns about privacy and confidentiality also extend to promotion of tribal rights to control data and protection of collective tribal confidentiality and privacy in data and research (Taitingfong et al., 2020).”

    From Using Indigenous Standards to Implement the CARE Principles: Setting Expectations through Tribal Research Codes (2022) · cites this paper as Taitingfong et al., 2020

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Authors
Taitingfong, R., Bloss, C. S., Triplett, C., Cakici, J., Garrison, N., Cole, S., Stoner, J. A., & Ohno-Machado, L.
Affiliations
  • University of California San Diego (US)
  • San Diego State University (US)
  • University of California, Los Angeles (US)
  • Texas Biomedical Research Institute (US)
  • University of Oklahoma Health Sciences Center (US)
  • Department of Biomedical Informatics, School of Medicine, University of California, San Diego, La Jolla, California, USA
Corresponding author
Bloss, Cinnamon S
ORCID
Venue
Journal of the American Medical Informatics Association
Publisher
Oxford University Press (OUP)
Published
2020-10-15
Volume
27
Issue
12
Pages
1987-1998
ISSN
  • 1067-5027 (ISSN-L)
  • 1527-974X
DOI
10.1093/jamia/ocaa235
PMC
PMC7727344
OpenAlex
W3093291855
Cited by
30
References
1
Citations by year
2026: 6 · 2025: 4 · 2024: 4 · 2023: 6 · 2022: 4 · 2021: 6
FWCI
0.67
Type
journal article
Language
en
Open access
Licence
Locations
  • Journal of the American Medical Informatics Association (publishedVersion, cc-by-nc-nd)
  • PubMed Central (publishedVersion, cc-by-nc-nd)
  • PubMed (publishedVersion)
  • eScholarship (California Digital Library) (submittedVersion)
  • eScholarship (California Digital Library) (submittedVersion, cc-by-nc-nd)
Funders
NIH (R01 HL136835, R01 HG008753)
Topics
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
  • Social Sciences › Health › Indigenous Health, Education, and Rights
  • Physical Sciences › Computer Science › Information Systems › Thoreau and American Literature
Keywords
health data privacy, Indigenous health, health research participation, genetic data, biological specimen, data misuse, stigma and discrimination, breach of confidentiality, trust in research, health equity
MeSH terms
Attitude to Health, Confidentiality, Humans, United States, Biological Specimen Banks, Privacy, Genetic Privacy, Ethics, Research, American Indian or Alaska Native, Native Hawaiian or Pacific Islander, Health Records, Personal

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