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This paper is in the following e-collection/theme issue:

Viewpoints and Perspectives (636) Ethics, Privacy, and Legal Issues (659) Public (e)Health, Digital Epidemiology and Public Health Informatics (1119) Big Data (318) Secondary Use of Clinical Data for Research and Surveillance (495) Data Science (396) Vulnerable Populations in Health Research (270) Standards and Interoperability (157) Big Data for Health Promotion and Health Equity (57)

Published on in Vol 27 (2025)

Preprints (earlier versions) of this paper are available at https://preprints.jmir.org/preprint/70983, first published .
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

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

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

Authors of this article:

Cason D Schmit1, 2, 3, 4 Author Orcid Image ;   Meghan Curry O’Connell5 Author Orcid Image ;   Sarah Shewbrooks5 Author Orcid Image ;   Charles Abourezk5, 6, 7 Author Orcid Image ;   Fallon J Cochlin1, 2, 3 Author Orcid Image ;   Megan Doerr8 Author Orcid Image ;   Hye-Chung Kum1, 2, 4 Author Orcid Image
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Journals

  1. Bear Don't Walk IV O, McLester-Davis L, Trinidad S. Rectifying Genocidal Data Stewardship: A Commentary on Ethical and Legal Obligations for Sharing Data With Tribal Entities. Journal of Medical Internet Research 2025;27:e77946 View
  2. Calac A, Gasca L, Swain W. Responsible Governance of Tribal Public Health Data: Data Sharing Ethics and Common Challenges in the US Public Health System. Journal of Medical Internet Research 2025;27:e77249 View
  3. O’Connell M, Wondmeneh S, Penney J, Labgold K, Johnson Jones M, Hill N, Shewbrooks S, Duran T, Taylor M. Reflections on a Tribal–Federal Response to a Syphilis Outbreak. Public Health Reports® 2026 View