Data Control and Sharing

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From 1990 to 1992, the Havasupai Indians in Arizona participated in a study by researchers at Arizona State University that was to look into why the tribe had such a high rate of diabetes. The Havasupai gave blood samples to the researchers, and later found that those samples had been used to study a range of things — from ancestry to mental illness — that the Havasupai had not approved. The tribe then sued Arizona State, the Arizona Board of Regents, and three professors. Last year, Arizona State agreed to pay the Havasupai $700,000 and to return the samples.

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