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Arizona’s Broken Arrow
November, 2008, Page 134
Havasupai Carletta Tilousi sat in horror at an ASU presentation in 2003, learning that the blood she and her tribe had given to study diabetes was really used to study other things, including schizophrenia. She was one of the first to sue ASU and the Arizona Board of Regents.
Markow, whose academic star kept rising, moved to the University of Arizona in 1999 as the Regents professor of ecology and evolutionary biology. That’s where she was interviewed on August 15, 2003, by Stephen Hart and his associate, Keith Sobraske. (Markow has since transferred to the University of California at San Diego.)
The investigators showed Markow several exhibits, including a grant application that clearly referred to the project as “the Havasupai Diabetes Project.” “According to Dr. Markow, the diabetes project fell under the umbrella of the ‘medical/genetics’ project, and as far as she was concerned, this covered any and all diseases affecting the Havasupai Tribe.”
Investigators underlined that contention since it so contradicted what everyone else was telling them – that this was only a diabetes study. That was the understanding of Martin, who had brought the project to ASU and felt so honored by the tribe’s trust he told colleagues that he and ASU had a “covenant” with the tribe. That was the understanding of Vaughan, the nutritionist, and of James Collins, Markow’s department head and the head of ASU’s biology department at the time. It also was the understanding of officials at the Indian Health Service, some of whom came to ASU for a luncheon early in the project to hear it described as studying only diabetes. Graduate students also knew this project to be focused on diabetes only, and the only one who knew differently says Markow told him to lie about it to the tribe. And there was no question the entire Havasupai Nation believed it was giving its blood to study diabetes, period.
Markow maintains to this day that she had permission to test for things other than diabetes and that her “proof” is the consent forms signed by some of the Havasupai who donated blood. She insists the project had two focuses: diabetes and schizophrenia.
But the Hart Report would conclude this: “Considering the totality of the circumstances, it is most likely that the donors understood this to be a diabetes project only.”
Hart further found that Markow’s account of events differed from others on almost every major point.
For instance, she was asked for the sacrosanct lab notebooks that showed the scope of the work, the identity of the donors and where samples had been sent. This crucial documentation is part of any research project. Markow said her former lab director, Chris Armstrong, had taken them. But the investigators already had learned that Armstrong denied ever taking the lab books. Keith Coon, another graduate student, backed him up by saying he used those lab books after Armstrong already had left ASU. Markow later would say she found the lab books but then lost them again. The lab books have never materialized.
They asked her about consent forms – the bedrock of human research – and she said she had 105 consent forms in a file. But as investigators probed, she admitted all those forms were from 1990. When asked what happened to the consent forms for blood draws taken between 1991 and 1994, Markow said her “best guess” was that they were “lost by the moving company” that packed her up when she left ASU to join UofA.
But investigators already knew that wasn’t true.
They’d been told there never were any consent forms from 1991 to 1994 – by the student who actually had done the blood draws.
Daniel Benyshek was a master’s student in anthropology and new to research when he went to Supai to draw blood in 1991. He told investigators that, by now, all the participating tribal members already had given blood, and he found the remaining members reluctant because they’d “gotten taken in the past.” He admitted he never had tribal members sign a form, although he read them a “consent script” that told them their blood was being drawn to “exclusively” test for diabetes. (Markow says she’d never seen that script before and “it was contrary to what she understood was taking place,” the investigators note.)
Benyshek, who considered Martin his mentor, says he was told “the only way to do business with the Havasupai was on trust,” and he found that to be true. He says he never had any inkling the blood he was drawing would be used for anything but diabetes research. And he fondly remembers the tribal members he got to know so well. They remember him well, too. To his face they called him the “tall man.” Behind his back they jokingly referred to him as “Dracula.”
Benyshek says about every other Friday he’d helicopter out of Supai with a cooler full of blood samples headed to ASU. When he got to Seligman, he’d call ahead to give his arrival time, and he’d deliver the blood to Markow’s lab. He says no one ever asked him where the consent forms were, so he thought they weren’t a big deal.
Now with a doctorate in anthropology, Benyshek is an assistant professor at an out-of-state university. The Hart Report clearly favors Benyshek’s version of events over Markow’s, stating, “One doubts whether Dr. Benyshek would have any hidden motive to not tell the truth about the course of action he took with the Havasupai in 1991-1994, and if so, what that motivation might be, given that he is readily admitting a significant error,” the report notes.
The consent forms that do exist pose other problems for this project. There’s both a “script” and an actual form that was signed by those giving blood in 1990. The verbal script says that blood would be used to screen for genes “related to diabetes, schizophrenia and depression.” But the written consent form states blood would be used for “behavior/medical problems,” which is far less specific.
Markow’s former lab assistant, Chris Armstrong, told the Hart investigators that Markow had anticipated problems with the consent form. “She indicated that the language was broad enough in the consent forms that she would be ‘untouchable’ if the tribe objected,” the report states.
Markow’s attorney, Mick Rusing, gave
magazine copies of the script and written consent form, indicating they were proof enough that his client had permission to do whatever research she wanted. However, the Hart Report found official after official who kept insisting one form – or one verbal message – wasn’t enough.
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