Here’s an interesting case that shows how diabetes research can intrude into other realms of life: The Arizona Court of Appeals has cleared the way for the Havasupai Tribe to sue the state university system for improper use of blood samples that the tribe gave researchers in 1989 to help with a diabetes study.
The ruling overturns an earlier finding that the Havasupai did not meet legal requirements for filing a lawsuit.
The tribe, which lives in the remote western section of the Grand Canyon, provided blood samples to scientists from Arizona State University and the University of Arizona who were looking for a genetic basis for an unspecified diabetes epidemic.
In exchange for the samples, the researchers promised that they would not be used for any other research purposes. The tribe later learned, however, that the samples were used in research on schizophrenia and migratory patterns.
Most distressing to the tribe, which did not learn about the other uses of their blood until years later, was that the research into migration undermined one of their core religious beliefs: The Havasupai believe that they originated and have always lived in the Grand Canyon and that they did not migrate from Asia across the Bering Strait, as genetic research has shown.
The $50 million lawsuit the tribe is pressing claims that the blood was not only taken under false pretenses, but was also used to undermine tribe members’ foundational beliefs about the world.
Blood was taken from about 200 tribal members in 1989. No money changed hands, but 15 Havasupai were allowed to take college-level summer school classes for free.
Also at issue, according to the tribe, is the use of their blood samples in research that could have great commercial value. Because they have been isolated for so long, the Havasupais have a “pure” bloodline that has been undiluted by marriage-an ideal object of study for geneticists.
Ironically, the original study seeking a genetic basis for diabetes produced no significant results.