Washington Post, by Shyndya Bhanoo - read the article
In 2003, the Havasupai Indians of Arizona issued a banishment order against Arizona State University, forbidding researchers from setting foot on their reservation in response to prior unauthorized DNA research done on tribal members’ blood samples. In 2002, the Navajo Nation banned DNA studies out of fear of how their samples might be used by scientists.
But many genome scientists believe that health care can be improved with the use of genetic information and are concerned that if indigenous communities do not participate, they will be left behind. This has led to a major effort, particularly among younger researchers of indigenous descent, to work collaboratively with communities, consulting with their leaders and holding preliminary meetings where members help design research projects.
“It means having conversations with people over beer, dinner and music to gather ideas about what people are interested in,” said Keolu Fox, a genome scientist at the University of California at San Diego, who is Native Hawaiian and whose research focuses on people of Polynesian descent. “It means speaking in a church, setting up a meeting, just talking to people. Asking questions.”