Havasupai case

In 1989, researchers from Arizona State University (ASU) embarked on a research partnership called the Diabetes Project with the Havasupai Tribe, a community with high rates of Type II Diabetes.  The Diabetes Project with the Havasupai included health education, collecting and testing of blood samples, and genetic association testing to search for links between genes and diabetes risk.  After several years of trying, the researchers were not successful in finding a genetic link to Type II Diabetes. They then used the blood samples containing DNA for other unrelated studies such as studies on schizophrenia, migration, and inbreeding, all of which are taboo topics for the Havasupai.

In 2004, the Havasupai Tribe filed a lawsuit against Arizona Board of Regents and ASU researchers for misuse of their DNA samples. The lawsuit articulated concerns about lack of informed consent, violation of civil rights through mishandling of blood samples, unapproved use of data, and violation of medical confidentiality. In April 2010 tribal members received $700,000 for compensation, funds for a clinic and school, and return of DNA samples


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