Imagine donating a sample of your DNA to help researchers study the genetics of diabetes. The disease is common among your friends and family, and you’re proud of your role in finding out why. Now, imagine that some time later, you learn that your DNA has been used for other studies on topics you never expected — schizophrenia, human migration, inbreeding. Although your name isn’t attached to the sample anymore, scientists are using your DNA to draw conclusions about your community and your ancestors. Some of these studies violate your cultural beliefs.
That’s what happened to the Havasupai Tribe of Arizona. In 2004, they sued Arizona State University, the institution that originally collected the DNA, for failing to provide ethical oversight on the use of the samples. The case is still working its way through the courts.
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