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- Between 1990 and 1994, John Martin and Therese Markow collected DNA samples from 400 members of the Havasupai tribe for a diabetes project being conducted by Arizona State University. The Havasupai are an American Indian tribe who have lived in the Grand Canyon and have high rates of type II diabetes. Because of a desire to better understand the high rates of diabetes, members of the tribe willingly gave blood samples to ASU under the assumption that it would be used for genetic testing. In 2003, a member of the Havasupai tribe named Carletta Tilousi discovered that the blood samples given to ASU were not being used for diabetes testing. Instead, they were being used for a multitude of different studies that the Havasupai had not consented to. In 2004, the Havasupai tribe filed a lawsuit against the Arizona State of Regents for misuse of their DNA samples as well as a lack of informed information regarding the intentions of ASU. In 2010, the Havasupai Tribe v. Arizona Board of Regents came to a close with a favorable outcome for the Havasupai tribe. Although the outcome did not set any legal precedent, the tribe was given $700,000 in compensation, and their blood samples were returned. The return of the samples was the most important part for the tribe because blood and DNA are sacred material to Native American culture and personhood. This case set an unofficial precedent for informed consent and brought to light indigenous vulnerability. It also forced researchers to be more transparent about the vast possibilities of information that can be gathered from DNA. Cultural implications for tribes were also brought to light through this study because of the effects this case had on the cultural traditions of the Havasupai people. Overall, bioethics were questioned with this trial, and it created a mistrust between Native American communities and the medical world. Although no legal precedents have been set, this case had brought to light the need for ethical research practices especially with regards to Native American communities. (en)
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- Between 1990 and 1994, John Martin and Therese Markow collected DNA samples from 400 members of the Havasupai tribe for a diabetes project being conducted by Arizona State University. The Havasupai are an American Indian tribe who have lived in the Grand Canyon and have high rates of type II diabetes. Because of a desire to better understand the high rates of diabetes, members of the tribe willingly gave blood samples to ASU under the assumption that it would be used for genetic testing. In 2003, a member of the Havasupai tribe named Carletta Tilousi discovered that the blood samples given to ASU were not being used for diabetes testing. Instead, they were being used for a multitude of different studies that the Havasupai had not consented to. (en)
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- Havasupai Tribe v. the Arizona Board of Regents (en)
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