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

Viewpoints and Perspectives (1423) Ethics, Privacy, and Legal Issues (815) Public (e)Health, Digital Epidemiology and Public Health Informatics (2322) Big Data (441) Secondary Use of Clinical Data for Research and Surveillance (641) Data Science (711) Vulnerable Populations in Health Research (358) Standards and Interoperability (224) Big Data for Health Promotion and Health Equity (75)

Published on in Vol 27 (2025)

Preprints (earlier versions) of this paper are available at https://preprints.jmir.org/preprint/70983, first published .
Line graph showing steep increase in red line from 2020-2021, orange line rising, blue line steady.

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
Article Authors Cited by (6) Tweetations Metrics

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;141(5):618 View
  4. Cochlin F, Weber-Fares R, Crespo J, Sage W, Schmit C. Trust, Transparency, and the Fragile Promise of Data Governance in the Era of Modernization. Journal of Law, Medicine & Ethics 2026;54(S1):10 View
  5. Islam H, Jayarman P, Reid N, Guckhool P, Britt-Lalich M, Shams P, Xu Z, Cimino J. The Roles of Biomedical Informatics for an Equitable Learning Health System: Lessons from a Year of Scientific Informatics Literature. Methods of Information in Medicine 2026 View
  6. Vu T, Watts H, Meyer C, Kuzma I, Baggett K, Tial B, Boyer T, Ismail P, Michos E, Hays A, Minhas A. Indigenous Health Disparities in Hypertensive Disorders of Pregnancy Within the United States. Current Hypertension Reports 2026;28(1) View