Nature has more on Navajo leaders – in charge of the second-largest Native American group in the U.S. – possibly ending 15 years of forbidding genetic studies on their people:
The tribal government banned DNA studies in 2002 to prevent the misuse of its members’ genetic material. Although there is still some apprehension about the risk of allowing researchers access to Navajo DNA, the tribe’s leaders increasingly see genetic research as a tool to improve medical care for the 174,000 residents of their sprawling reservation, which is roughly the size of Scotland.
As it now stands, Navajo people who live on the reservation must drive hundreds of kilometres to access specialized medical care off tribal lands, in large cities such as Phoenix, Arizona. “We spend millions of dollars outsourcing [care] for cancer and diabetes,” says Walter Phelps, a delegate to the Navajo Nation Council. As the tribe — a nation independent of the United States — tries to expand the health services it offers to its members, he says, “the moratorium could become a barrier when blood and tissue have to be collected”.
The Navajo Nation’s new oncology centre provides part of the impetus for revisiting the genetic-research ban. It will be the first such facility on Native American lands outside of Alaska. Allowing some genetic testing at the centre could help physicians to identify the most effective therapies for each patient, says Lynette Bonar, chief executive of the Tuba City Regional Health Care Corporation in Arizona, which will run the facility.
That would match the standard of care that many Navajo people with cancer have received at medical facilities off the reservation. And creating a repository for such genetic material on Navajo land would enable research into the genetic and environmental factors underlying a broad range of diseases, not just cancer.
Native Americans in the southwestern United States want to avoid repeating the experience of the region’s Havasupai tribe. In 2004, the group sued Arizona State University in Tempe over alleged misuse of tribe members’ blood samples. The Havasupai said that the samples, which had been collected for diabetes research, had later been used in studies of schizophrenia, migration and inbreeding without their consent. The university made a settlement with the tribe in 2010, paying US$700,000 and returning the blood samples.