Havasupai tribe files $50M suit against ASU
By LARRY HENDRICKS
03/16/2004 – The Arizona Sun

Two weeks on the heels of a $25 million lawsuit filed by 52 members of the Havasupai tribe, the tribe itself filed a $50 million lawsuit Friday in Coconino County Superior Court against Arizona State University, the Arizona Board of Regents and three ASU professors.
Both suits claim that more than 400 blood samples taken from tribal members between 1990 and 1994 were supposed to be used to study the tribe's concerns with diabetes. No permission was given for the samples to be used in research on inbreeding, schizophrenia and theories about ancient human population migrations to North America.

The Arizona Attorney General's Office, representing ABOR and ASU, has not filed a response to the suits because the suits have yet to be formally served.
Both suits specifically name every ABOR member, including the two "ex officio" members, Gov. Janet Napolitano, and Tom Horne, state superintendent of schools.
The suits claim a lack of oversight by ASU's Institutional Review Board, which violated federal and state law, allowed the unauthorized studies using the blood samples to occur.
"We've had no formal service on (the suits)," said Richard Albrecht, assistant Attorney General.

According to Arizona law, once a suit is filed, the filer has up to 120 days to formally serve the suit on the suee. During that time, the suit may be amended.
Albrecht was assigned to the Havasupai tribal claim, which is the precursor to a lawsuit. He said he is aware of the individual member lawsuit but he was unaware the tribe filed suit as well.

Whether the claims in the suits have any merit, Albrecht said he was not ready to say.
"We're still evaluating the claims," said Albrecht. "Obviously, there are concerns on the part of the university as to what happened."
Once the Attorney General's Office is served with the suits, a response to those suits will be made, Albrecht said.

Attorneys for the tribe could not be reached for comment Monday.
According to the suits, which make nearly identical claims, professors John Martin, Therese Markow and Daniel Benyshek helped create and implement a diabetes project at the request of the tribe. The project was supposed to offer three components: Diabetes education, collecting and testing blood samples from members to identify diabetics or people who are susceptible to the disease, and conducting genetic testing to see if members were more susceptible to the disease.

In 2003, a tribal member approached ASU administrators and asked if the blood samples had been used for research other than that agreed to by the tribal members. An independent investigation was begun. That investigation revealed the following: Tribal members were misled. The tribal members gave blood specifically for the Diabetes Project, they were not offered nor did they give informed consent to any other research.
The independent investigation uncovered "... numerous unauthorized studies, experiments and projects by various universities and laboratories throughout the United States ..." that resulted in at least 23 scholarly papers, articles and dissertations that involved the Havasupai blood samples. Fifteen of those publications dealt with subjects that had nothing to do with diabetes -- like schizophrenia, inbreeding and theories about ancient human population migration to North America.

The tribal members did not give their "informed consent" for the use of the blood samples for any studies other than diabetes. Tribal members were also unaware of Markow's unauthorized access to more than 100 of their medical records to look for signs of schizophrenia. Professors also collected hand prints "under false pretense" to study diabetes when in fact they were studying inbreeding.

The blood samples were lost or destroyed through mishandling. The suits claim "wholesale transfer of blood samples from laboratory to laboratory and university to university for over a decade to the extent that many blood samples cannot be accounted for at this time."
Additionally, samples were allowed to spoil, and documentation of the research was either lost or destroyed.

The ASU Institutional Review Board is the agency that establishes and approves written protocols for federally funded research projects at the university, and must review, monitor and approve all research involving human subjects to make sure that research functions within the law.

The suits also request a stop of all use and transfer of the blood samples, genealogy information and hand prints and preventing any further publication or sharing of that information.

Larry Hendricks can be reached at lhendricks@azdailysun.com or 556-2262.
Copyright 2004 Arizona Daily Sun