The Havasupai Tribe has filed a $50 million lawsuit against Arizona State University, the Arizona Board of Regents and three researchers alleging that blood samples taken from tribal members under the pretext of diabetes research were destroyed, lost or used in studies of schizophrenia, inbreeding and population migration without the donors' consent.
The suit, filed Friday in Coconino County Superior Court, comes in the wake of a $25 million lawsuit filed by 52 individual tribal members. That suit also names the Board of Regents, the three researchers and ASU as defendants.
Both suits allege that nearly 400 blood samples from more than 180 donors were collected from 1990 to 1994 by researchers John Martin, Therese Ann Markow and Daniel Benyshek.
Individual members of the board, including president Chris Herstam and ex-officio members Gov. Janet Napolitano and state Superintendent of Public Instruction Tom Horne were also named in the tribe's lawsuit.
Tribal chairwoman Linda Mahone would not comment on the lawsuit Tuesday, nor would members of the Board of Regents.
"There definitely is evidence that there was never an intent to strictly do diabetes research," said the tribe's attorney, Robert A. Rosette of the law firm Monteau & Peebles LLP. "The tribe is very upset about the negligence of Arizona State University and the violation of their civil rights."
ASU officials had yet to be served with the tribe’s lawsuit. But in a statement responding to the earlier lawsuit filed by individual tribal members, ASU spokesman Virgil Renzulli disputed the allegations and said the university "will vigorously defend itself."
The tribe's suit alleges that in 1989, Martin and Markow developed a project to study the diabetes epidemic ravaging the Havasupai Tribe. The project consisted of three parts: Diabetes education, collecting blood samples from tribal members for research, and genetic testing to identify which genes in the Havasupai caused diabetes.
Martin and Markow presented that project "strictly as a diabetes project" to the seven-member tribal council between 1989 and August 1990. The tribe's suit also alleges that the researchers used diabetes to get the tribe's cooperation, which was necessary in order to obtain grants from the National Institutes of Health.
On May 14, 1990, Martin asked the tribe for a letter endorsing the project's research protocol, and tribal leaders provided it "with the understanding that the Project would be focused solely on diabetes research," according to the suit.
Immediately after obtaining the blood samples, Markow illegally obtained more than 100 medical charts from the Supai Health Clinic in the Supai Village to identify patients with schizophrenia, according to court records.
Researchers also collected handprints from test subjects in 1992, claiming they would be used in the diabetes study, but they were actually used in a research project involving inbreeding, according to court records.
The tribe's suit also alleges that the Institutional Review Board, which regulates ASU research involving human subjects, failed to stop the mishandling and transfer of the blood samples to laboratories and research institutions across the country. Those findings appeared in 23 scholarly papers and 15 publications dealing with "schizophrenia, inbreeding and theories about ancient human population migrations from Asia to North America."
Using the samples in migration theories was particularly offensive to the Havasupai because their religion and culture is based on the belief that their origins as a people come from "Red Butte" located in the Grand Canyon, Rosette said.
Thirteen years after approving the diabetes project, the tribe began an investigation at the prompting of tribal member Carletta Tilousi. Apparently, Tilousi came across those publications and "realized this was her tribe they were talking about," Rosette said.
Renzulli disputed Rosette's version of events, saying it was an ASU researcher who came across the mishandling of the blood samples and reported it to officials. ASU then launched an independent investigation to track the blood samples and return them to the original donors or their families.