ASU President Michael Crow wanted the university to be “the place to go for North American Indian Studies” when he started in 2002. Photography by Mark Peterman

Trust of outsiders doesn’t come easily here, but once it comes, it’s cherished. The tribe seems particularly leery about medical intrusions; giving their blood would be one of the most discussed and agonizing decisions they’d ever make. Everyone will tell you they only agreed because they trusted this white man named John Martin.

By 1989, it was clear diabetes was an epidemic in the village. Elders had it, younger men and women had it, and now it was showing up in children. That, probably more than anything, is what prompted the huddle at a summer picnic, where they asked their friend John Martin if his people at ASU could help them figure out how to overcome this medical calamity.

“I saw many of my people with this sickness,” says Rex Tilousi, who was vice chairman of the tribe then. “I saw legs amputated and people having to take shots every day. I went to John and told him my concerns for the future. He came back and said, ‘We can help.’”

Martin, who had been teaching at ASU since 1966, knew this request was a breakthrough with the tribe, and he thought help could come in two forms: genetic research and nutrition education. He went back to ASU in the summer of 1989 looking for the best experts he could find.

For the nutrition aspect of the study, Martin approached ASU professor Linda Vaughan, who eagerly joined the project. Vaughan would tell Hart she knew this to be a “diabetes only” project.

Then Martin went looking for a human geneticist, and he didn’t have to search hard. At the time, ASU’s genetic research was mostly done on animals; very little work was being performed on humans. The entire university had only one human geneticist, but she was already a true star in getting research grants. Therese Markow, a biology professor with an interest in schizophrenia, welcomed Martin’s invitation. She told him she would like to expand the research to also test for schizophrenia.

The Hart Report explains what happened next:

“Martin told Markow that in all likelihood the Havasupai Tribe would not be interested in a study on schizophrenia. He told Markow, instead, that the Havasupai were terrified about the present and future effects of diabetes and that if they started work on diabetes, they might be able to broaden the scope of the project later.

“There is no question in Dr. Martin’s mind that this project was all about diabetes, although at times Markow pushed for possible (future) work on schizophrenia…. Martin thought that Markow eventually ‘pulled back’ on the idea of studying schizophrenia among the Havasupai.”

Vaughan also says she understood that Markow’s interest in schizophrenia research “never got off the ground.” But it did. Almost immediately, in September 1989, Markow applied for a grant from the National Alliance for Research on Schizophrenia and Depression to study schizophrenia in the Havasupai people. They awarded her $92,880, according to the Hart Report.

The blood draws began in July 1990, when graduate student Kevin Zuerlein was sent to Supai. That summer, he collected blood from about 100 tribal members – those most committed to the project. At least, that was his day job. At night, when everyone had gone home, he searched through medical records in the Indian Health Service clinic, looking for signs of schizophrenia in specific tribal members from a list Markow had given him. He told the Hart investigators he had a “mandate” from Markow to search for schizophrenia and was under the impression she had “permission” for these clandestine record searches.

But the Hart Report quotes four officials of the Indian Health Service, all saying there was “no way” anyone would have authorized such an invasion of privacy.

David Morgan, who oversaw medical services for the IHS at the time, says if anyone had ever asked for such a review – and no one ever did – it would have been a “major event” and could only have happened if approved by both the Tribal Council and individual tribal members. He says that approval would never have been given, noting mental health issues are “very sensitive” with the tribe.

About the same time Zuerlein was secretly going through medical records, ASU was hosting eight young women from the tribe for a summer program on campus that taught them about nutrition and exercise and their relationship to diabetes. Markow had helped get the grant to pay for the summer program. By the end of the summer in 1990, the ASU News Bureau was touting the Havasupai diabetes project in a news release. Martin could boast to the tribe that ASU President Lattie Coor was so impressed with the project he had made it one of the university’s “top five priorities.” As far as the public knew, this project was about diabetes only.

In fact, Hart would find the only ones who didn’t believe this project focused entirely on diabetes were Markow and Zuerlein, who thought of this as “Dr. Markow’s project on schizophrenia which had a diabetes component.” But even then, Zuerlein said he never heard schizophrenia mentioned by members of the tribe or at the Tribal Council meetings he attended; he only heard the project referring to diabetes.