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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

For example, Megan Doerr argues that building or establishing a “social license” for collecting and using data can be more appropriate and protective than deidentification [47]. A social license represents the informal permission of a community to engage in a specific activity [48,49]. In public health contexts, a social license can legitimize the collection, use, or sharing of data about relevant communities.

Cason D Schmit, Meghan Curry O’Connell, Sarah Shewbrooks, Charles Abourezk, Fallon J Cochlin, Megan Doerr, Hye-Chung Kum

J Med Internet Res 2025;27:e70983

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