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Native American Research Lawsuit Settled

Posted for Rex Dalton.

About 20 years ago, researchers started trekking into Arizona’s Grand Canyon to conduct genetic research on an isolated Native American tribe with a very high rate of type 2 diabetes. A hike, a mule or the occasional helicopter were the only ways to reach the small band of Havasupai.

But what started as an effort to learn about the genetic causes of diseases turned into a long-running legal battle – halting the project and reverberating nationwide through other Native American tribes (see: When two tribes go to war).

On April 20, the two lawsuits brought by the tribal government and its members were settled for $700,000, closing the books on the remaining legal points after six years of courtroom battles. When the lawsuits were filed in 2004, Arizona State University in Tempe and its researchers were accused of taking tribal members’ blood without informed consent, violating federal law on human subject studies, fraud and invasion of privacy.

The researchers denied the charges then, and still do. Mick Rusing, a Tucson attorney representing the one remaining researcher defendant, notes that all those charges were rejected by judges as the case moved through state and federal courts. The remaining claim in state court related to alleged negligence.

After recent mediation sessions, the $700,000 settlement agreement was hammered out and approved by a state Legislature committee, which considers such claims for state universities. The original lawsuits sought $75 million.


The tribal government will receive no money, state attorneys say. The award will cover legal expenses for the 41 tribal members who remain as plaintiffs, with those members dividing the amount left after the legal costs, their attorney says. The exact details of those distributions are private, say Stephen Hanlon, a Washington, DC attorney for tribal members; he adds he isn’t being paid.

Hanlon also declines to comment on the overall impact the lawsuit has had on Native American research.

Carletta Tilousi, one of those suing and a member of the tribal council, says in a joint press release with ASU’s Board of Regents and the Havasupai that the tribe hopes “this experience helps create better awareness, understanding and cooperation between this institution and our people”.

The joint release says the regents and ASU “apologized” to the tribe for any alleged wrongdoing, and the Havasupai acknowledged “great efforts have been made” by ASU on Native American research oversight.

As a part of the settlement, ASU agrees to work to improve education and health services for the tribe, but without committing to additional financing. And the tribe agrees to rescind its 2003 ban on participating in ASU research.

But overcoming the legacy of the case may be difficult, because of dissemination though the media of various allegations and distortions. For instance, the state of Arizona commissioned an investigation in 2003, but this found no misconduct.

The state then released the investigative report – in which some of the most serious allegations were made by a former ASU doctoral graduate who was a convicted felon for dealing cocaine. When the state’s investigating attorney interviewed the accuser, he was living in a half-way house after violating the terms of his criminal probation and was also being treated for drug/alcohol abuse.

Geneticist Therese Markow – the former ASU leader of the project and the remaining researcher defendant – told Nature: “I’m glad it’s over; but it never should have happened. There was no basis for any claim. They would have lost had it gone to trial.”

When the project began, the ASU Humans Subjects Committee approved genetic studies of diabetes, schizophrenia and depression. Markow, who is now at the University of California at San Diego, says the research was conducted properly, tribal leaders were briefed on the studies, and patients were treated with respect.

But the aggrieved tribal members later claimed they were unaware of aspects of the study, like the genetic analysis of mental illness.

Markow’s attorney, Rusing, said at least a half dozen of the original suing tribal members were shown not to have been in the study. Markow added that plaintiff Tilousi “wasn’t in the canyon” during the study.

Tilousi’s attorney Hanlon acknowledged that it “may be true” that Tilousi’s participation in the study can’t be documented. She insists she was in the canyon then.

Because he wasn’t familiar with details of the case, Hanlon referred further inquiries to Robert Rosette, the Chandler, Arizona, attorney for the tribal government. Rosette didn’t respond to an interview request.

“Tribal members were mislead by various parties,” says Markow. “This created suspicious sentiments; made them feel vulnerable. That was a shame; a travesty.”

In the end, she says, these misconceptions spread through various Native American communities making them more suspicious of researchers.

“It is a bitter irony that a group of people who historically have been under-served with respect to health-related research may now become even more under-served,” says Markow.

Comments

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    Turtle Heart said:

    The article does not do a very good job of explaining what the basis of the complaints from the tribe were, in detail. It would have been a better article if it followed the who, where,what and why basis of good writing. The link to more details requires payment and registration to examine. Your best argument seems to imply the tribal members were deranged for their distrust of this process. There is an enormous amount of cultural truth left unspoken in this article in my view. More clarity would be helpful but thanks for this information, as the whole subject area does not get much press.

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    zorg said:

    Why is the claim “patients were treated with respect” left unchallenged? No evidence is presented. The only matter discussed in detail is that allegations were made by a criminal! Yet these allegations were made in a report commissioned by the body (State of Arizona) responsible for paying any settlement!

    If the purpose of this article is, as I suspect, to discredit those who question research ethics, it fails. Instead, it raises more questions in the mind of this reader.

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