Havasupai can sue over blood tests by ASU, UA

Havasupai can sue over blood tests by ASU, UA

Arizona's Havasupai Tribe has been given the go-ahead to sue the state
university system over claims that researchers improperly used blood
samples of its members, including to undermine tribal beliefs.

In a case with religious and commercial overtones, the Arizona Court of
Appeals on Friday overturned a trial judge's conclusion the Havasupai did
not comply with legal requirements before filing suit. That gives the
tribe and individual members the chance to sue for damages.

That would give them the chance to argue that their blood was taken under
false pretenses and that researchers at Arizona State University and the
University of Arizona are doing analysis not authorized.

Potentially more significant, it would allow them to ask a court to
conclude that the research being done directly undermines their core
religious convictions. That includes the belief that tribal members always
have lived in the Grand Canyon and their ancestors did not, as the
research seeks to show, migrate across the Bering Strait from Asia.

Chandler attorney Robert Rosette, representing the tribe, said members
agreed in 1989 to provide blood samples based on the promise that they
would be used solely to determine if genetics were related to a perceived
"epidemic" of diabetes. That research failed to pan out.

The lawsuit charges, however, the blood taken from more than 200 people
was used for various other studies including schizophrenia and migratory
patterns, all in direct contradiction of not only the promise but basic
tribal beliefs.

It was not until years later that tribal members learned of the new research.

As a basic premise, Rosette said the blood was, in essence, stolen, having
been taken under false pretenses.

He said blood of Havasupai tribal members is considered extremely rare
because they are cut off from the rest of the world. That makes their
blood undiluted with intermarriage. Rosette said that makes it "extremely
valuable" for commercial researchers and others involved in genomics
research.

"They took advantage of these people by saying they were going to help
with a diabetes epidemic," he said. Instead, he said, researchers used it
"for their own personal gain and profit" for other studies.

"It's one of the most egregious acts I can think of," he said,
particularly as tribal members did not understand the financial value of
their blood. The suit says the only compensation the tribe received is
that 15 members were allowed to attend summer classes free of charge.

The tribe is seeking $50 million. A separate claim by some individual
tribal members seeks another $10 million.

Rosette said, though, that the issue goes far beyond money, as researchers
are using the blood to try to show that the basic tenet of the tribe's
belief in its roots is erroneous.

"When you challenge the belief system that is their central way of life,
and you did it in such a way as to steal their blood and then create the
emotional distress that it's caused, it's significant," he said.

"It's a life-altering event for each and every one of those tribal members
that academic institutions and science is now telling these folks that
their religion and their cultural beliefs are wrong," he continued. "They
would have never opened themselves up to this type of scrutiny or
challenge to their belief systems, not in a million years would they have
done that, had they known that this was the true intent of Arizona State
University and others."

Some of the charges go specifically to research done originally at ASU by
Therese Markow who now is at the University of Arizona. A 2003 report
commissioned by ASU said professor John Martin, who had built a
relationship with the tribe, had been asked to look into diabetes. Martin
sought the help of Markow based on her genetics expertise.

That report said her name never appeared on the results of that diabetes
research. Instead she and others published a paper in 1997 that says the
Havasupai genes have more in common with Asian people than South American
tribes, countering the tribal belief that human beings originated in the
Grand Canyon.

Court records show Markow told Martin early in the process she wanted to
expand studies into schizophrenia, but Martin told her that would not be
acceptable to tribal members. Despite that, Markow prepared a grant
application on the issue and eventually received funding for that study.

Arizona Board of Regents' spokeswoman Andrea Smiley said the board is
interested in negotiating a "mutually beneficial conclusion" to the
dispute despite the fact it has tried to kill the lawsuit.

Calls to Markow and other defense attorneys were not immediately returned.
But in a statement released through her attorney in 2005, Markow said she
was only trying to understand "the biological underpinnings of the health
issues of the Havasupai." She also called the tribe's allegations
"hysterical."

http://www.eastvalleytribune.com/story/131398