Digital Natives: How Medical and Indigenous Histories Matter for Big Data

This case considers the politics of reuse in the realm of “Big Data.” It focuses on the history of a particular collection of data, extracted and digitized from patient records made in the course of a longitudinal epidemiological study involving Indigenous members of the Gila River Indian Community Reservation in the American Southwest. The creation and circulation of the Pima Indian Diabetes Dataset (PIDD) demonstrates the value of medical and Indigenous histories to the study of Big Data. By adapting the concept of the “digital native” itself for reuse, I argue that the history of the PIDD reveals how data becomes alienated from persons even as it reproduces complex social realities of the circumstances of its origin. In doing so, this history highlights otherwise obscured matters of ethics and politics that are relevant to communities who identify as Indigenous as well as those who do not.