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Schmit CD, O’Connell MC, Shewbrooks S, Abourezk C, Cochlin FJ, Doerr M, Kum HC
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 Indian and Alaska Native Communities
Cason D. Schmit;
Meghan Curry O’Connell;
Sarah Shewbrooks;
Charles Abourezk;
Fallon J. Cochlin;
Megan Doerr;
Hye-Chung Kum
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.
Citation
Please cite as:
Schmit CD, O’Connell MC, Shewbrooks S, Abourezk C, Cochlin FJ, Doerr M, Kum HC
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