The conflict between Native American traditions and biomedical research reflects the broader efforts of Native Americans to make sense of their history and current position in the world, Puneet Sahota, a recent graduate of the MD/Ph.D program at Washington University in St. Louis, said in a lecture in Kemeny Hall on Thursday. Sahota described the many ways in which Native American tribal members are trying to create a healthier future by taking control of medical research.
In the lecture, "Boundaries, Bioethics and Blood: Native Americans' Complex Relationship with Medical/Genetics Research," Sahota described her 20 months working with a Native American tribe in the Southwest, during which she observed the conflict between modern genetics research and traditional Native American customs.
"The tribe I worked with is taking control of research in innovative ways," she said.
The tribe agreed to contribute $5 million to a new genetics research institute in exchange for significant control over the research being conducted. The terms of the contract specified that the tribe would be a co-holder of all patents resulting from the research, and called for a revised informed consent form, Sahota said. It was also agreed that tribal leaders would be involved in running the institute, according to Sahota, who played a key role in the drafting of the contract.
"When I came to the community, the tribe asked that I give something back [in exchange for my research]," Sahota said. "They asked that I help them write their own policies and guidelines."
The tribe initially rejected Sahota's request to interview tribal members for her genetics research, she said. Sahota explained that she was eventually permitted to conduct interviews only after she agreed not to share her findings with genetics research companies.
Native Americans' rights in the context of medical research has become a delicate issue as genetics research has grown in popularity, according to Sahota. Still, the increased prevalence of diabetes among southwestern Native Americans has prompted many tribal members to call for more genetic analysis to help address health concerns.
Sahota noted that the high diabetes rate may be explained by the thrifty-gene hypothesis, which proposes that people who were historically prone to famine have a slower metabolism, and are thus predisposed to develop medical conditions when exposed to Western high-fat diets.
She added that many tribal members are disappointed that Native Americans are often identified with these diseases, rather than their many cultural achievements.
"For many, diabetes was intertwined with tribal identity, and the identity of being Native American," Sahota said.
Although many tribal members were enthusiastic about the benefits of research, others expressed serious reservations, Sahota said.
While she was studying the tribe, "Miracle cure" salespeople often approached tribal members claiming to be able to cure diabetes and other ailments, Sahota said. She described one salesperson who claimed his fruit juice would cure diabetes, but when tribal physicians analyzed the juice, they found it had an even higher sugar content than ordinary juice.
Many Native Americans also worry that genetic data verifying the Bering Strait hypothesis -- the idea that North America was first inhabited by people crossing from Siberia to Alaska via a land bridge -- will undermine Native American claims to being truly native to the Americas, she said.
"People conduct scientific research without realizing that their work is interpreted in all different ways," Sahota said.
Sahota accomplished most of her research by conducting in-depth, one-on-one interviews with members of the Native American tribes.
When asked about her initial goals, Sahota said she hoped to learn and write about community members' views and provide policy recommendations.
"I wanted to help genetic researchers do their job better, and to help health care providers work better with ethnic and minority groups," she said.
Sahota said she will begin a post-doctoral fellowship at the National Congress of American Indians Policy Research Center in Washington, D.C. in June.
