05 Mar The Two Faces of Research: the Havasupai experience with Arizona State University
Seven years ago, the Havasupai Indians, who live amid the turquoise waterfalls and red cliffs miles deep in the Grand Canyon, issued a “banishment order” to keep Arizona State University employees from setting foot on their reservation — an ancient punishment for what they regarded as a genetic-era betrayal.
Members of the tiny, isolated tribe had given DNA samples to university researchers starting in 1990, in the hope that they might provide genetic clues to the tribe’s devastating rate of diabetes. But they learned that their blood samples had been used to study many other things, including mental illness and theories of the tribe’s geographical origins that contradict their traditional stories.
In this video from FNIGC’s 2011 National Conference to announce the release of RHS Phase 2 (March 1, 2011), members of the Havasupai Nation, Dianna Sue Uqualla and Carletta Tilousi, discuss their long fight to control research about their people.
To read more about their struggle — and eventual victory — read this story: http://www.nytimes.com/2010/04/22/us/22dna.html?pagewanted=all&_r=0