Author: Jon Merz
Date: 03-06-04 11:06
URL: http://www.azdailysun.com/
From: Michael Oakes (oakes@epi.umn.edu)
Arizona Daily Sun (Flagstaff)
February 28, 2004
Havasupai file $25M suit vs. ASU
By LARRY HENDRICKS, Sun Staff Reporter
Members of the Havasupai Tribe filed a $25 million lawsuit Friday in Coconino County Superior Court against Arizona State University, the Arizona Board of Regents and three ASU professors.
The 52 tribal members named in the suit claim they were told more than 400 blood samples taken from them between 1990 and 1994 would be used to study diabetes, not inbreeding, schizophrenia and theories about ancient human population migrations to North America.
And it was a lack of oversight by ASU's Institutional Review Board and violation of federal law that allowed the unauthorized studies using the blood samples to occur, according to the lawsuit.
"What ASU has done is outrageous as far as the way they treated the people of the Havasupai Tribe," said Robert J. Lyttle, co-counsel for the 52 members. "Whenever there's human subjects involved in research, there's federal laws and regulations and university rules that must be strictly followed, and those laws and rules were violated."
Paul Ward, attorney at the ASU Office of General Counsel, said he was aware of a claim filed by the 52 members of the Havasupai Tribe.
"Arizona State has not been served, so I have not seen the complaint," Ward said of the suit.
Ward said a second claim also has been filed in the matter.
"We were served with a claim by the Havasupai Tribal Council some months ago, and we have been engaged off and on in active discussions with the leadership of the Havasupai," Ward said.
He said he could not comment further, and referred other inquiries to Richard Albrecht, Arizona Attorney General's Office. Albrecht has been assigned to the Havasupai Tribal Council claim.
According to the filed complaint, professors John Martin and Therese Markow worked with members of the tribe to design a project to study a pressing medical issue of the tribe -- diabetes -- in 1989.
The resulting "Diabetes 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 identify an association between certain gene variants and diabetes."
Professor Daniel Benyshek helped in the blood collection and research.
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.
The ASU administrators selected an attorney to conduct an independent investigation. That investigation led to the following claims: 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 studies, contends the lawsuit, are an affront to the Havasupai, who believe they originate from "Red Butte" in the Grand Canyon, also called "Wi gidwisa" in the Havasupai language.
Lyttle said after the human experimentation conducted in Nazi Germany and in Tuskeegee, Ala., an awareness of the need for ethical practices became prevalent.
"The main tenet of that is informed consent," Lyttle said.
The National Research Act passed in 1974 included language about informed consent, Lyttle said.
"You have to provide information to people, they must understand that information, and they must voluntarily agree," Lyttle said. "None of that was followed here." Markow, immediately after receiving blood samples, gained access to more than 100 Havasupai tribal member medical records to look for signs of schizophrenia. She did this without consent of the tribal members, the complaint states. In 1992, the named professors
collected 36 hand prints from tribal members "on the false pretense that they would be used in conjunction with the diabetes study when in truth and in fact, defendants knew or should have known at the time of collecting they were to be used in a research project involving inbreeding." The blood samples were lost or destroyed through mishandling. The complaint specifies how Martin, Markow and Benyshek allowed the
"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.
According to the complaint, the IRB must "review, monitor and approve all research involving human subjects undertaken by faculty or students whatever the source of funding to insure compliance with all state and federal laws and its own written protocols."
The complaint, in addition to the $25 million, requests a stop of all use and transfer of the blood samples, genealogy information and hand prints.The complaint also requests an order preventing any further publication or sharing of information obtained directly or indirectly from the blood samples, genealogy information and hand prints.
The case has been assigned to Mark Moran, Coconino County Superior Court Judge Pro Tem.
Reporter Larry Hendricks can be reached at
lhendricks@azdailysun.com or
556-2262
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