Accepted for/Published in: Journal of Medical Internet Research
Date Submitted: Jan 7, 2025
Date Accepted: Feb 26, 2025
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
Dying in Darkness: Deviations from Data-Sharing Ethics in the US Public Health System and the Data Genocide of Indian and Alaska Native Communities
ABSTRACT
Tribal governments and Tribal Epidemiology Centers face persistent challenges in obtaining the public health data that is essential to their legal and ethical duties to promote health in American Indian and Alaska Native (AI/AN) communities. We assess the ethical implications of current impediments to data sharing between federal, state, and Tribal public health partners. Public health ethics obligates public health data sharing and opposes data collection without dissemination to affected communities. Privacy practices often obstruct data access, with de-identification and data suppression disproportionately affecting AI/AN populations, exacerbating health disparities. The 2020-2024 syphilis outbreak illustrates how restricted data access impedes effective public health responses. These practices represent a source of structuralized violence throughout the US public health system that contributes to the data genocide of AI/AN populations. Good governance, through transparent data practices and establishing a social license, is essential to ethically balance collective well-being with individual privacy in public health.
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© The authors. All rights reserved. This is a privileged document currently under peer-review/community review (or an accepted/rejected manuscript). Authors have provided JMIR Publications with an exclusive license to publish this preprint on it's website for review and ahead-of-print citation purposes only. While the final peer-reviewed paper may be licensed under a cc-by license on publication, at this stage authors and publisher expressively prohibit redistribution of this draft paper other than for review purposes.