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A dispute between a Native American tribe and a local university was resolved this week, when the Havasupai people and Arizona State University signed a settlement agreement regarding the use of Havasupai DNA for research. Experts watching this case say the agreement could have wider implications, requiring more communication by researchers to those donating genetic material, regarding disclosure of its full intended use.
The New York Times reports the Havasupai, who traditionally reside in the Grand Canyon, gave their blood to ASU researchers to study and to try to determine why the Havasupai people have such a high incidence of type 2 diabetes. Instead, the tribe says, the blood was used for other endeavors, including researching links to mental illness and theories of the tribe's geographical origins that unfortunately contradict their traditional stories. Blood is a sacred material to the Havasupai.
According to The Times, the University has agreed to "remedy the wrong that was done." Under the agreement, all blood samples will be returned to the tribe and the Board of Regents has agreed to pay $700,000 to 41 members of the tribe.
Any researcher receiving federal funding must obtain "informed consent" from subjects. However, this consent requirement was developed to apply more to physical risks, and questions about use and misuse of genetic material are less clear. Even consent forms may not always suffice. English is a second language for many Havasupai.
The Times notes this case has possibly raised the question of whether the Arizona State scientists had taken advantage of a vulnerable population, an issue which could create an image problem for a university hoping to be considered a center for American Indian studies.
Other difficulties with full informed consent can arise simply because a researcher cannot always predict where the research will take him or her. The line between pursuing relevant lines of research and misusing an individual's genetic material is thin. The scientist involved in the research using the Havasupai blood samples still defends her actions as ethical. "I was doing good science," Dr. Markow, now a professor at the University of California, San Diego, said in a telephone interview with The Times.
Perhaps it is as much a matter of communicating respect as information. "I'm not against scientific research," said Carletta Tilousi, 39, a member of the Havasupai tribal council told The Times. "I just want it to be done right. They used our blood for all these studies, people got degrees and grants, and they never asked our permission."