For years, the tribe that lives at the bottom of the Grand Canyon has been seeking justice for what it calls ‘genetic piracy,’ claiming ASU misused blood samples from most of the adult population. ASU maintains the tribe shouldn’t be allowed to sue.
Aral Putesoy Kaska knows all about the Arizona State University research project on diabetes.
She remembers the debate among the tribe, the reluctance, the questions of trust. But in the end, she gave her blood, convinced by her Havasupai Tribal Council that scientists in Tempe could find answers to stop the disease from spreading to her daughters and the grandchildren she hoped one day to have.
She also was one of 10 tribal women who studied nutrition at ASU in the summer of 1990, hoping a better diet could help stem the epidemic that affects half the women in the tribe and 45 percent of the men – the third highest diabetes rate in the world.
It never occurred to her – and she wouldn’t know for 13 years – that the blood of an isolated group of Native Americans, among the oldest blood on the continent, would be considered so rare it would be a “gold mine” to scientists – not to study diabetes, but to study mental illness, inbreeding and Indian migration patterns, studies that assaulted both her culture and her religion. On top of that, she and the tribe discovered they were never going to get the precious answers they sought, because in all those years, ASU had not done the genetic diabetic research it promised.
These days, Aral works in the only restaurant in Supai, the Havasupai village at the bottom of the Grand Canyon that was flooded and evacuated last summer. Her diabetes is worse than ever. Her daughters have it, and she expects her grandchildren to get it. Whenever she needs medical help, she either hikes or helicopters out of the canyon to seek care in Tuba City. She won’t go to the Indian Health Service clinic in the village anymore. That’s where they took vile after vile of her blood.
She explains all this as she sits in her brother’s tribal office – Matthew Putesoy is vice chairman of the tribe – and talks about what became known as the Medical Genetics Project at Havasupai. Her body language is sometimes sad – head down, shoulders slumped – and sometimes angry, with her head held defiantly high, shoulders squared.
If she knew then what she knows now, she says she never would have allowed them to take her blood. “They lied to me,” she says. “I trusted them, and that was broken.”
She’s asked what she would tell ASU President Michael Crow or the Arizona Board of Regents if they were sitting in front of her now. She hesitates for a long time. “I can’t even say it in English,” she finally says. It’s suggested she use her native language and let her brother translate.
Here’s what she says in Havasupai: “You’ve hurt us so bad that we feel like we don’t trust anyone anymore. We don’t want anything to do with the university anymore. We hate you all.”
As Matthew translates the words into English, Aral’s eyes well up, and she hastily excuses herself before she breaks down. “She’s expressing the sentiment of the tribe,” he says as his sister rushes out.
Aral isn’t the only one who has cried over this research project, which the small tribe calls a “severe, gross human rights violation against an entire Indian community.”
It happens even with those you’d never expect, like Dennie Wescogame, a broad-shouldered, husky man who works with his hands and looks you straight in the eyes as he talks. He not only gave his blood for the project but worked in the Supai clinic, helping ASU researchers and students collect blood from most of the adults in the tribe.
“I wanted to better the tribe,” he explains. “Then I found they were using our blood for all these different things. To me, personally, it was raping me of my blood. It was using my blood for their own goals. They’re taking a part of my soul away from me. I feel stabbed in the back because I took blood from my own people for them.”
And then the tears come. Most men, when they cry, hide their faces or furtively wipe away the tears, but 45-year-old Dennie doesn’t do any of that. He continues talking as tears well up in both eyes and trickle down along the creases of his face. He’s not ashamed that he’s crying, and it’s obvious this has happened many times before.
“I’m puzzled every day how this can be,” he says. “I can’t believe they don’t see what they did to us.”.
The Havasupai say that what the ASU research project did to them was “genetic piracy,” defrauding and betraying them for personal and professional gain. Specifically, they charge:.
• They authorized the use of their blood for diabetic research only, and while some basic, routine testing was done, no significant genetic research on diabetes ever took place.
• Instead, their blood was used to study schizophrenia and the Bering Strait theory of Indian migration – a study that basically says Native Americans aren’t natives at all but rather immigrants from Asia who came across a land bridge.
• Another unauthorized study used their handprints to look for patterns of inbreeding..
• Although they’d been promised their blood would be kept “under lock and key” at ASU, it was sent to universities and private labs around the country.
• Their medical files at the Indian Health Service clinic in Supai were raided in the dead of night to look for signs of schizophrenia in specific people.
They say all of this has been disastrous for the tribe. Many tribal members now are “so distrustful” they refuse to seek any medical or diagnostic care, says Tribal Chairman Don E. Watahomigie.
“Today we have 20 people on dialysis for their diabetes because they wouldn’t seek help until it was too late,” he adds, noting this wasn’t happening in 1990 when the ASU study began. “We’re worse off than we were then.”
Just as troubling are fears for the tribal members who have died since giving their blood – they’re seen as being doomed and prevented from traveling to the Spirit World because their blood is lost. (Since filing the suit, five plaintiffs have died of diabetes-related complications.)
“In our tribe, when someone dies, we bury all their possessions – sometimes even their favorite horse,” says Matthew Putesoy, whose mother died of complications stemming from diabetes this summer. “That frees them to travel to the Spirit World and doesn’t keep them trapped here. But what do we do now? If we got their blood back, how would we bury it? We’d have to consult our elders. We’ve never had anything like this before.”
He adds this issue would never have arisen had the research project gone as expected, for the blood would have been tested and returned to the tribe long ago.
The tribe says it was left out of any benefits from its “sacred blood”: Eight graduate students earned advanced degrees because of these blood samples; about two dozen research papers were published (about 15 of them on schizophrenia); professors received tens of thousands of dollars in research grants; and academic careers were greatly advanced. “Everybody benefited from this except us,” Chairman Watahomigie says.
“We so much want to resolve this,” says Nancy Tribbensee, general counsel for the state’s university system and a former ASU lawyer who has been involved in this issue since 1997. Although she says the ongoing lawsuit prevents her from talking about the merits of the case, she did want to say this: “We are working very hard to come to a mutual agreement.”
Tribal attorneys say it’s hard to resolve an issue when one side refuses to admit it did anything wrong. Tribal attorney Robert Rosette says he’s been a part of mediation meetings in which ASU officials have told him, “There’s no broken bones – you haven’t been harmed.” He’s also heard them say the scant publicity this case originally received was “all the damage this will bring us” and, therefore, they were going to contest everything. He says someone at ASU (he won’t say who) has told him the tribe will never get a “red nickel.” And indeed, a March 22, 2004, article on ASU’s Web Devil (a student-driven news Web site) states: “The University disputes the allegations and will ‘vigorously defend itself.’”
The scientist whom the tribe believes is most at fault has dismissed its claims with one word: “hysterical.”
Yet, an independent investigation into this research project – jointly sponsored by ASU and the tribe and funded by ASU – basically proves every charge. The Hart Report shows how the project went off track almost immediately; it documents how strict rules on consent and record-keeping were ignored; it reveals the voices that tried to alert the university to the brewing storm; and it unmasks fabrications that could sink important careers.
It does it with careful language and, at times, sidestepping language, but the meat of the report – some 400 pages of narrative, including 34 interviews and 319 exhibits, plus about 4,000 pages of attachments – tells a story that is hard to dispute.
Tribal attorney Robert Lyttle, a former adjunct professor of law at ASU, says tribal officials weren’t initially thrilled that ASU chose Stephen Hart as its independent investigator. Hart had been executive director of the Arizona Department of Gaming under former Governor Jane Hull and had negotiated state compacts on Indian gaming with various tribes. The government and the tribes were often at odds.
“We weren’t surprised he tried to subtlety soft-peddle the report [to benefit the university], but we were surprised how the professors’ stories contradicted one another, and there’s no way you can spin that; no one can hide that,” Lyttle says.
He notes that one of the most devastating documents discovered during the investigation – a frantic memo to ASU President Michael Crow from the founder of the Havasupai project, stating, “I believe the charges to be true” – wasn’t even mentioned in the Hart Report, but was found among the 4,000 pages of attachments.
But even given the mountain of evidence and admissions of guilt, this case hasn’t been settled; it’s being fought in court. For the past five years, ASU, the Arizona Board of Regents and the Attorney General’s Office have been embroiled in lawsuits with the Havasupai Tribe and individual members over what happened with the blood project.
The case already has been through five courts – both state and federal – although the merits of the actual case have never been argued. The only issue before these courts has been the assertion by the state agencies that the Havasupai Tribe shouldn’t be allowed to sue because it didn’t follow Arizona’s notice-of-claim law.
This law is intended to prevent lawsuits by promoting mediation and negotiation; the “notice” tells the state what it would take to settle the case. The law requires notice within 180 days of learning of the injury and says a dollar amount must be specified. The state contends the tribe filed its claim “years too late” and originally cited no amount.
Tribal lawyers strongly contest those claims and have taken their arguments all the way to the Arizona Court of Appeals, where the case currently sits.
“They don’t dare face us on the merits of the case,” says attorney Lyttle, “so they’re trying to beat us on technicalities.”
David Abney of the Arizona Trial Lawyers Association, which has joined the case as a “friend” of the tribe, agrees. He recently told the Appeals Court, “There’s no doubt that anyone hearing the facts in this case would have anything but utter contempt for what the government did.”
That’s not the point, argues the state Attorney General’s Office. It told the court: “It may indeed be sad when claimants lose the chance to have their case heard on the merits because their attorneys failed to file a proper notice of claim. But any sympathy is misplaced….” It says the law is the law, and that’s the end of it.
The Havasupai Tribe may never get its day in court. ASU and individual professors may walk away unscathed. Or someday, a jury may hear all the evidence in this case. But for the Havasupai, whatever happens in the future won’t change what happened in the past. As longtime Tribal Council member Agnes Chamberlain says, “This chapter of the tribe’s history is written in blood, and it will never go away.”
It all started at a picnic in Supai, the Indian village of 670 people that sits on one of the most beautiful spots on earth. The housing and public buildings aren’t much to brag about, but the setting is: The stark red walls of the Grand Canyon form the backdrop of the Havasupai Tribe’s capital.
Many tribal members have lived in this village their entire lives and can trace their ancestry back generations – to the first moment in time, actually, when their story of creation tells them they emerged from the earth of the Grand Canyon as the Havasupai people.
What happened was one of the quickest mea culpas in Arizona history. As Thomas faced the media, he was well aware that criticism was already pouring in from the state’s entire political spectrum. Many complained that he allowed a “trampling” of the Constitution.
So they see it as particularly disturbing to attack their religious beliefs by suggesting they are a migrating people who came to this continent over the Bering Strait centuries ago. It also raises a new fear: “They can tell us, ‘You don’t belong here, you’re not a native here,’” says Tribal Chairman Watahomigie.
Long before there ever was a Grand Canyon National Park, these people lived here among its beauty, spending the fall and winter on the plateau, hunting and gathering, then moving into the canyon for the spring and summer to plant their gardens.
“When the reservation was created in 1882, the federal government confined us to the 518 acres at the bottom of the canyon, and we lost almost 90 percent of our aboriginal lands,” the tribe’s Web site states. The economic loss was devastating. Their hunting grounds were gone and many were forced to leave the canyon to become wage laborers – going “up top” they called it. In 1975, Congress reallocated 185,000 acres of the original hunting grounds back to the tribe. Today, tourism is its No. 1 industry.
This is a society where the possession of alcohol, drugs and firearms is illegal. They even discourage machetes on their campgrounds. The people receive no government stipends, “and we pay income taxes just like all Americans,” the site notes.
The village today has a 24-room lodge, a small café, a post office, a school, a church, a clinic, a police station and a general store. Visitors can get there by hiking in, riding a horse or taking the helicopter that runs a few hours four days a week. And that goes for all supplies, too, including groceries and all fresh fruits and vegetables.
It was here that a young anthropology student named John Martin decided to stake his professional career more than 30 years ago. He lived in Supai in the 1960s, studied the tribe, got to know all the elders, mapped their complete lineage and earned his doctorate with a thesis on the tribe for the University of Chicago. “He was our friend,” many still say. “We trusted him.”
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.
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 PHOENIX 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.
One of the strongest voices on this subject was the man who was Markow’s biology department chairman at the time. James P. Collins told Hart that, “informed consent consisted of the totality of the information imparted… and not individual components, such as an informed consent document.” Furthermore, Collins said, the “ultimate decision” about changing or expanding research lies with the donor, not the scientist. Additionally, the Hart Report chronicles how ASU scientists handled the rules and regulations that govern human research. And although the report tried to sidestep the issue, saying its intent was not to analyze whether rules were broken or not, the narrative lays out a path that shows federal regulations, demands of granting groups and ASU’s own protocols weren’t respected.
Human research is governed by books of rules for obvious reasons. Universities that undertake human research with grants from national institutes and the federal government must attest that they’re following regulations. Internally, that job is done by ASU’s Institutional Review Board (IRB), which is “delegated the task of approving research projects involving human subjects,” the Hart Report notes. “The IRB must ensure that when some or all the subjects are likely to be vulnerable to coercion or undue influence, such as economically or educationally disadvantaged persons, additional safeguards have been included in the study to protect the rights and welfare of these subjects.” The Havasupai people clearly fell into this “vulnerable” category.
While there are dozens of points along the way when the IRB appears to have been little more than a rubber stamp for Markow, a few notes in the Hart Report stand out:
• Markow never sought IRB approval for the Havasupai project until January 18, 1991 – six months after blood had already been collected from at least 100 tribal members.
• The IRB appears ignorant to the claim that no consent forms were collected from 1991 to 1994 until well after the tribe discovered what was really happening.
• There was no IRB application or approval for at least three graduate student projects that used the Havasupai blood.
• There was no IRB approval for an inbreeding study conducted by Martin.
IRB officials told the Hart investigators in August 2003 that they were in the process of “significantly” revising their process of overseeing human research.
Chris armstrong WAS A graduate student when the Havasupai project began in 1990, and he said that, from the very start, professor Markow told him to conceal he was studying schizophrenia. He kept quiet, he said, because this was his field of study, and he felt Markow had a “gold mine” for schizophrenia research with her access to Havasupai blood.
He said Markow told him the tribe had a 7 percent incidence of the mental illness, and he planned his dissertation around a study of their blood to see if it showed a genetic explanation for the disease.
Armstrong kept a diary during his college years – years also marked by abuse of alcohol and drugs – and he shared the diary with Stephen Hart during the internal investigation.
The diary notes that in late summer of 1990, as he prepared to go to Supai, Markow told him not to talk about schizophrenia with the tribal members. A couple years later, he says he lied directly to Tribal Vice Chairman Rex Tilousi during a visit to the ASU lab. He contended he was “instructed” not to tell Tilousi he was working on schizophrenia but to tell him he was studying diabetes.
“When he asked Markow for an explanation, Markow indicated that telling Tilousi that he was working on schizophrenia would ‘scare’ the Havasupai and would threaten the future use of DNA from the Havasupai in other research projects,” the Hart Report says.
Markow “strenuously” denied the subterfuge. She said they were not studying the mental illness at the time but acknowledged to Hart that she “instructed Chris that it was premature for him to discuss such a study with members of the population.” Armstrong countered that he was well into his dissertation research at this point, and he felt “shame” that he had lied to Tilousi.
Eventually, Armstrong found he could not establish the Havasupai link to schizophrenia that he was looking for and said Markow couldn’t verify the 7 percent claim; it turns out the claim is unfounded. He ended up shifting the focus of his research and received his doctorate in 1996.
By then, Armstrong had become concerned that there were bioethics problems with the Havasupai blood project. In particular, Markow’s former lab director worried that Markow did not have the proper “informed consent” for any research beyond diabetes. He wrote to her about his concerns, but she never answered him. He eventually decided to bring the issue to the attention of ASU officials. “He acknowledged that he had two motives: first to correct the situation, and second, he was upset with Markow,” the Hart Report notes. “He was angry and frustrated that he could not complete work on schizophrenia, despite the fact that Markow had made a number of promises about all the work that Armstrong would be able to do on schizophrenia with the Havasupai Tribe.”
Armstrong then wrote letters to the ASU professors whose bioethics courses he had taken, including the vice president for research and the chairs of the biology and philosophy departments.
Armstrong told the Hart investigators that he knew he was jeopardizing his career with these letters, because he knew he’d no longer get favorable referrals from his adviser, Markow. He eventually heard back from Nancy Tribbensee, then a legal adviser to the university and now the legal adviser to the state’s entire university system. She told Armstrong his charges were “unfounded.”
Armstrong says he thought of taking his concerns to the tribe but ultimately decided against it. But he did fire off an angry e-mail with a veiled threat, noting that if the tribe, the media and the National Institutes of Health knew about these problems, they’d have “a field day getting to the bottom of these issues.”
Markow’s attorney, Mick Rusing, doesn’t put much faith in either the findings of the Hart Report or Chris Armstrong’s veracity. He calls the report “a bogus, put-up job” and says he can’t believe they’d take the word of someone like Chris Armstrong over a nationally honored scientist like Markow. He calls Armstrong “a flake,” claiming “he has a vendetta against the school and professor” and can’t be trusted because of a history of alcohol and drug abuse. (Indeed, the Hart Report goes into considerable detail of Armstrong’s abuse problems, including his 1999 felony conviction of distributing cocaine, which brought a 37-month sentence he completed in April 2002.)
Markow told PHOENIX magazine she only wanted to speak through her attorney, just as she told the Arizona Daily Star in 2005. Through her attorney, she told the Star that she was only trying to understand “the biological underpinnings of the health issues of the Havasupai.” The paper quoted her as calling the tribe’s allegations “hysterical.”
Armstrong wasn’t the only one who’d blow the whistle on this research project. So would the man who founded the project, John Martin. But that would come long after most of the damage already had been done.
Nobody understood how bad things were until early 2003.
By then, a lot of things had changed at Arizona State University. Lattie Coor (who did not return calls for comment on this story) had retired and been replaced by the brilliant, bold and ambitious Michael Crow. Martin was pleased that President Crow adopted an “Indian initiative” and wanted ASU to be “the place to go for North American Indian studies.”
Crow also wanted ASU to become a “new American university” and pegged a lot of hopes on a future filled with biogenetic research. Becoming a major research university is a bragging right in the academic world, and Crow went after the idea vigorously.
So Martin was particularly upset when he learned in early 2003 that a graduate student named Dan Garrigan had used Havasupai blood samples for a doctoral dissertation on migration patterns that had nothing to do with diabetes and also, without permission, had used Martin’s own lineage studies of the tribe.
What this meant is that one of ASU’s first human research projects had gone awry, and the implications could threaten relations with the entire Indian community.
Martin alerted top ASU officials that there was a problem brewing with this dissertation and that there had been no “informed consent” for this research. Then he invited an old friend from Supai to attend the dissertation presentation. It was March 4, 2003, and for an entire tribe, the world was about to change.
Carletta Tilousi grew up in Supai and has known John Martin since she was a child. “John allowed me to drive his car so I could get a license,” she remembers. “That’s how close he was to my family.”
When the Havasupai project began, it was Martin’s closeness to the tribe – “he knew a lot of our stories and a lot of the ancestors” – that convinced members this was legitimate. After all, she remembers, it would be the first time the tribe had ever allowed its blood to be taken for a research project.
Carletta was finishing high school, and she thought the study sounded so good because the diabetes problem was so bad. “I’m dying, they’re dying, let’s do it,” she remembers thinking.
After high school, she traveled the world for several years and worked for the United Nations on environmental and justice issues.
“I experienced different cultures and societies and languages, and that’s what made me go to college,” she says. She knew she’d be one of the few tribal members to ever earn a college diploma. She chose ASU and was getting a bachelor’s degree in justice studies in 2003 when Martin invited her to the dissertation presentation.
She remembers sitting in the back of the room with Martin and “Dracula” (Benyshek had flown in from Las Vegas for this presentation). In the front of the room, on the dissertation panel, sat Markow.
As she listened to Dan Garrigan defend his research on Native American migration patterns, Carletta heard him make reference to 18 blood samples from the Havasupai Tribe, “and I thought, oh my God,” she remembers. “And I’m getting angrier and angrier. I get nervous when I talk in front of people, but I raised my hand and I asked, ‘Did you get proper consent from the tribe to do this research?’ The whole room looked at me.”
She remembers Garrigan became flustered, admitted he didn’t have permission, and then someone quickly adjourned the panel.
“John Martin turned to me and said, ‘Bullets are going to fly.’”
She remembers an ASU dean rushing up to her, saying he wanted to talk. “He ushered me into another room” with all the professors, and “everyone was yelling at each other.”
She says she will always remember seeing Markow reaching her arms up as far as they would go, declaring, “I have consent forms this high.”
“The dean asked, ‘What could we do to remedy this?’” Carletta remembers. “That was the first and last time they asked that question.”
She went home to her husband, attorney Robert Lyttle, whose entire law practice focuses on Native American claims. They found the situation to be unbelievable. Then she called Tribal Chairman Watahomigie to tell him what she’d learned. She remembers the sad trip home, when she went “door to door” to explain to each person what had happened. There also was a meeting attended by most of the tribe, during which they confronted Martin and Benyshek. Martin laid all the blame on Markow, characterizing her as “arrogant and reckless.” He contended she “controlled the funds, controlled the knowledge and controlled the raw materials.”
But the answers were skimpy and spotty, and Carletta looks back and realizes they didn’t have any idea yet how big the problem was or what had happened with their blood samples. But they knew enough to know ASU hadn’t been honest with them.
As attorney Rosette puts it: “This was like taking their land. Now they’re taking a part of them that’s worth billions in research, but who in this tribe would know that?”
On May 8, 2003, in a special Tribal Council meeting, the Havasupai Tribe approved a “Banishment Order” that barred ASU, its professors and employees from the reservation forever. The order was the first of its kind and states: “The Havasupai Tribe has demanded that ASU disclose to the Tribe all of its actions regarding Havasupai blood and stop all unauthorized experimentation on Havasupai blood, but ASU has failed to disclose to the Tribe any information about where ASU distributed the blood and the purposes for all research.”
Three days later, Martin sent an “urgent” memorandum to the highest officials at ASU, starting with Michael Crow. It is a devastating memo that warns the tribe has planned a news conference for May 14 to publicly make its charges that their blood was misused and transferred to other universities, all without their knowledge or consent. “I believe the charges to be true,” Martin added.
The two-page, single-spaced memo then lays out the history of the research project and the problems already known – information he warned would “seriously embarrass ASU.” (To read more about the desperate memo, visit phoenixmag.com.)
Martin begged Crow to pick up the phone and call the Tribal Chairman to personally settle this dispute, suggesting ASU’s apology and promise to return all the blood would satisfy the tribe and “could end this.”
It is not known what Crow said or did when he read the memo (Crow’s office did not return calls from PHOENIX magazine for this story), but what happened next suggests he demanded immediate action. ASU was finally paying attention, and efforts were quick to stop a news conference that could have meant far-reaching damages to ASU’s hopes of becoming a major player in the world of genetic research.
Two days after Martin’s shocking memo and one day before the tribe’s planned press conference, the Havasupai Tribe received a fax from the university’s legal office saying it was prepared to fund “an external authority to investigate what had happened.” The tribe agreed to call off its news conference to wait for the results of the study. That’s when attorney Stephen Hart was hired to head the investigation. Along with private investigator Sobraske, he immediately set about interviewing those involved and gathering documents.
He gave a preliminary report on September 5, 2003, revealing that the tribe’s fears were justified. Three days later, the tribe sent a notice of claim to Arizona Attorney General Terry Goddard, alerting the state that a lawsuit against one of its universities was coming. (This alert did not include the required dollar amount for such a notice. It was amended on March 5, 2004, by new tribal attorney Robert Rosette, specifying the tribe was seeking $50 million in damages.)
The final Hart Report was revealed in December 2003 in a face-to-face meeting in Flagstaff with ASU and tribal officials. Carletta remembers that Hart spent 45 minutes summarizing what he found, “and as the story gets worse and worse and worse, the Havasupai in the room are weeping,” she remembers. “A couple of the ASU officials were crying, too.”
Tribal attorney Rosette believes if they ever go before a jury, the Hart Report alone would make it see all the harm done to the Havasupai.
“They’re pulling every trick to keep us from getting to trial because they know if we go to trial, they’re sitting ducks,” he contends. “There’s a terrific fear of the truth coming out in front of a jury.”
Phoenix attorney Albert Flores, who represents individual tribal members, says, “A jury would see this was out-and-out fraud.”
After the Hart Report came out, the tribe finally understood exactly what had happened to them and how it had happened. They learned, for the first time, that during the blood draws, ASU personnel also took “handprints” that were used to study inbreeding – another study they never consented to.
They learned their blood had been sent for experiments to five scientists at private labs, as well as to Stanford University and the University of California at Berkeley.
They learned about the confessions of students who knew something was wrong, and how Chris Armstrong had tried back in 1997 – six years earlier – to alert ASU to a problem.
But Markow’s attorney, Mick Rusing, maintains the Hart Report is “biased” and presents “wild-eyed conclusions.”
On March 12, 2004, Carletta, joined by about 50 other tribal members, filed a formal complaint in Coconino County Superior Court in Flagstaff, claiming ASU researchers had committed “atrocious and utterly intolerable” breaches that “went beyond possible bounds of decency.”
Her husband was one of the attorneys filing the case. They originally asked for $45,000 in damages for each member. That number has since become a lump sum of $10 million. The tribe soon followed with its own lawsuit, seeking $50 million. It sued the university and the Board of Regents, along with Markow, Benyshek and Martin.
Martin makes it clear in a long e-mail to PHOENIX magazine that he thinks it’s unfair he has been included in the suit, since he was one of those trying to expose the problem.
He calls the actions of the university, Markow and Carletta Tilousi “contemptible,” and says, “The tragedy here is that this sordid, expensive affair might have been avoided had ASU dealt with it honestly in the beginning.”
But, he adds, all that is “trivial” compared to the damage done to discovering the real causes of diabetes in the tribe, which now is “impossible” because of broken trust and lawsuits.
Since then, the legal game has played out like a ping-pong match: The Arizona Board of Regents asked that the cases be moved to federal court, and the federal court dismissed the tribal members’ claims.
The members then went back to state court in Coconino County but were transferred to Maricopa County where, on April 30, 2007, Judge Janet E. Barton dismissed their claims. She said they hadn’t given the state enough information to support their damage amount – a standard that comes from a 2007 court ruling but which she applied retroactively to this 2003 case. This past June, the tribe and Tilousi asked the Arizona Court of Appeals to overturn that ruling.
The court system may not have looked seriously at the Havasupai’s claims, but many other Native American tribes across the nation have – including every tribe in Arizona.
On March 21, 2006, the nation’s largest tribe, the Navajo Nation, issued the first volley in what would be an avalanche of disgust from throughout Indian Country. The Navajo’s letter went to ASU provost Milton Glick, urging the university to “properly address the egregious violations of human subject research protocols and ethics committed against the Havasupai Nation….”
Beverly Becenti-Pigman, chair of the Navajo Health and Human Resources Review Board, says it was not only upset by what had happened but by how ASU was handling the issue. She says it appeared ASU was claiming it “can violate… Federal Regulations [to protect human research subjects] and the victims and the tribe would have no legal remedy…. We understand that ASU has also argued that once a biological specimen, such as a blood sample, is obtained from a human research subject, even if the specimen was obtained by fraud, that the human research subject loses all property rights to the specimen, and that ASU researchers are at liberty to use the specimen as they see fit.”
That letter was quickly followed on March 24, 2006, by a resolution from the Inter Tribal Council of Arizona, which represents all of the state’s tribes except the Navajo. It supports the Havasupai efforts “to protect its members against unauthorized research on their blood” and “condemns all unauthorized genetic research on Native American Indian Tribes.” It also calls directly on Governor Janet Napolitano, who is a member of the Arizona Board of Regents, to “ensure that the Havasupai’s claims are addressed promptly and appropriately.”
On July 15, 2006, the National Indian Gaming Association – representing 184 American Indian Nations – delivered a check to the Havasupai Tribe to support its litigation. That October, the National Congress of American Indians, the oldest and largest association of tribes, passed a resolution at its convention in Sacramento, California, that “admonishes Arizona State University and the State of Arizona for the apparent fraud on the Havasupai Indian Tribe.”
Individual tribes also passed resolutions throughout 2006 supporting the Havasupai, including the Salt River Pima-Maricopa Indian Community, the Gila River Indian Community, the Ak-Chin Indian Community, the Colorado River Tribal Council, and the Apache, Paiute, Ute, Fort Mojave, Hualapai, Cocopah and Tohono O’Odham tribes.
That wouldn’t be the end of it. On May 30, 2008, the Inter Tribal Council of Arizona again called on Governor Napolitano to act.
“We are informed the state continues to raise technical defenses to prolong litigation against the Havasupai, rather than work in good faith to settle its claims,” states the letter, signed by council president Shan Lewis, who is also vice chairman of the Fort Mojave Indian Tribe. “It is disheartening to Tribes in Arizona, which have generously contributed to Arizona’s universities in recent years, that after two years there is still no resolution to this matter.”
The governor’s office did not return PHOENIX magazine’s calls for comment on this story.
The Arizona Court of Appeals sits in a grand, beautiful building on west Washington Street, and it is here that the Havasupai Tribe hopes to get its day in court. But it’s also the place where the State of Arizona, the Arizona Board of Regents, Arizona State University and several professors – including Martin and Markow – hope to see this nightmare end.
For more than two hours on June 11, 2008, all sides of this argument came together in the same room to duke it out – not over the merits of the case but whether the tribe should be allowed to ever get in front of a jury.
The state’s case is that the tribe waited far too long to file any notice of claim, and when it did, it didn’t follow the law. So, according to the state, even if it is unfortunate, the tribe and individual members shouldn’t be allowed to sue. It’s crucial to determine when the tribe knew it had been damaged, since there’s a 180-day limit on giving notice to sue.
The state contends the tribe first knew studies on schizophrenia were being conducted because of a letter Martin sent them on April 29, 1997, and therefore, not sending a notice of claim until September 2003 was “years too late.” But tribal attorneys say this is absurd. The letter can be read a hundred times, they contend, and you’d never see it as “disclosing” anything. In fact, the letter seems to reassure the tribe there was no unauthorized testing going on.
If that wasn’t the date of discovery, the state offers several other options. Certainly, they say, the banishment order on May 8, 2003, must count. Tribal attorneys argue instead that everything was put on “hold” to allow the completion of the Hart Report and, therefore, the magic countdown of 180 days began after the preliminary report was presented on September 5, 2003.
Appeals Court Vice Chief Ann A. Scott Timmer told the state’s attorneys this “seems like a real Catch-22 here.” She acknowledges that the banishment order shows they knew of some damage, but she wonders if they knew the “extent” of their damages, and wonders if they really were required to make a settlement demand before they knew “the bulk of the facts.”
Assistant Attorney General Attorney Daniel P. Schaack told the court if they truly could not determine damages “they could have entered into negotiations.” But tribal attorneys and members of the Tribal Council say that’s exactly what they tried to do.
“All we originally asked for was an apology and a return of the blood samples so we could resolve this without court,” Tribal Chairman Watahomigie says. “But ASU said they were going to court.”
However, the university system’s general counsel, Nancy Tribbensee, insists ASU “did apologize and has repeatedly offered to give back” what’s left of the blood. “ASU went to considerable effort to collect the blood that still exists, but the tribe refused to accept it,” she says. “We would be most interested in working with individuals and the tribe at any time to return [the blood].” She stresses this point: “Regardless of what happens in court, ASU is committed to resolve this in a mutually agreeable manner.”
Chairman Watahomigie says he’s never heard anything close to an apology, and the blood that’s been offered is unmarked and unnamed – it could be any blood. “We don’t trust them anymore,” he says. “Now it’s too late to settle.”
There was an offer from the Arizona Board of Regents, he says: 10 computers, two printers and a scholarship program for nutrition or health-related studies. He says he can’t imagine a Havasupai ever attending ASU again and says the offer was “not worth responding to.”
“I think because we’re a small tribe and isolated, they didn’t think we’d do what we’re doing,” says Tribal Council member Coleen Kaska. “They thought we’d give up and go away. But we stood up. As small as we are, we’ll keep fighting.”
The council notes it was warned that if this issue went to court, it would take many years (read: many dollars). But if anyone thought that would scare them off, it shows a fundamental ignorance about the Indian mind set. Time is different here. They don’t measure it in hours and days, they measure it in generations and, in this case, in terms of honor. “Even if we don’t win, I believe we already have won for the tribe, because we stood up to them and said, ‘What you did was wrong,’” Kaska says.
She and a dozen other tribal members came to Phoenix from Supai to attend the Appeals Court hearing. She listened to tribal attorney Brendan Ludwick ask the court, “How do you put a dollar amount on a severe, gross human rights violation against an entire Indian community?” He says the harm to the tribe was clearly laid out in the university’s own Hart Report.
“The state had a wealth of information through the Hart Report – more than most claims could dream of,” he argued.
And there were new voices in court that day on behalf of the Havasupai: The Arizona Trial Lawyers Association Inc. has signed on as a friend of the case and is viewed as a powerful ally. Attorney David Abney told the court the state was playing games with the notice-of-claim law, pretending it didn’t know how to evaluate the extent of damages to determine if the $50 million request – an amount Abney called “modest” – was proper. “What more did they need?” he asked, incredulously. (Later, Judge Timmer asked the same question of the state’s attorneys.)
At press time, the Court of Appeals had not issued its ruling on this case. Regardless of the decision, it is expected the losing side will appeal to the Arizona Supreme Court. So this case could still be years away from ever seeing a courtroom – if it does. But one thing is clear: The Havasupai Tribe will never be the same again.
Carletta Tilousi tears up as she speaks about the “pain of betrayal” and says she hopes her tribe’s fight will change the research process so scientists are “more respectful of human beings.”
That’s not what happened here, she says: “It shouldn’t have been, ‘They’re just dumb Indians who don’t understand,’ but that’s what it was. We’re going to fight this to the end.”
Chronology of the Havasupai Research Project
Early summer, 1989: “Terrified” at the growing diabetes epidemic that is spreading to their children, Havasupai members approach their longtime friend, ASU professor John Martin, for help. He tells the university such trust represents a “covenant” with the tribe.
Summer, 1989: Martin builds a research team to focus on both the genetic and dietetic aspect of diabetes, adding Therese Markow, ASU’s only human geneticist at the time, and Linda Vaughan, a nutrition professor. Although Markow wants to expand the study to schizophrenia, Martin insists the tribe will never agree to that and is only interested in diabetic research.
September 1989: Apparently unbeknownst to others on the research team, Markow applies for a grant to study schizophrenia among the Havasupai from the National Alliance for Research on Schizophrenia and Depression. It awards her $92,880.
Fall, 1989: ASU vice president of research receives a Havasupai research proposal that focuses entirely on diabetes. It is titled the “Medical Genetics Project at Havasupai.”
January 18, 1990: Markow gets a $24,420 grant from the College of Liberal Arts and Sciences for a summer education program to bring tribal members to campus to study dietary ways to combat diabetes.
January 25, 1990: Martin sends a letter to Tribal Chairman Wayne Sinyella setting forth parameters of the research project, stating it is focused exclusively on diabetes.
July 1990: ASU student Kevin Zuerlein starts blood draws at the Indian Health Service clinic in Supai during the day. At night, he secretly goes through tribal medical records searching for signs of schizophrenia under a “mandate” from Markow.
Summer, 1990: Eight tribal women attend summer classes at ASU to learn about diet and exercise and their relationship to diabetes.
August 15, 1990: The ASU News Bureau issues a press release announcing the university and Havasupai Tribe have jointly begun a research project on diabetes. There is no mention of any other focus.
January 18, 1991: Although research began five months earlier, Markow just now receives her first approval to do human subject research on the Havasupai from ASU’s Institutional Review Board. She names her project “Schizophrenia: A Genetic Model.” Before research begins, the IRB must approve the project and then is charged with monitoring its progress, but the IRB is apparently unaware that research is already well under way and that the Havasupai thought they were being tested for diabetes.
March 12, 1991: Markow finally receives approval from the Institutional Review Board to study diabetes in the Havasupai.
March 14, 1991: Martin informs the tribe that ASU President Lattie Coor has made this research project “one of the five priorities of the university” and is actively seeking large grants from national foundations.
Summer, 1991: Graduate student Daniel Benyshek moves to Supai to conduct blood draws, continuing the work through 1994. He later admits he doesn’t get a single signed consent form but verbally tells donors their blood is being collected to “exclusively” study diabetes.
June 13, 1991: Markow receives approval from ASU’s Institutional Review Board for Havasupai nerve growth research related to schizophrenia.
September 9, 1991: Doctoral candidate Chris Armstrong, with Markow as his sponsor, is awarded a grant from the National Institutes of Mental Health for research focusing on schizophrenia in the Havasupai Tribe. This project is periodically renewed until August 1996.
November 16, 1991: Project leaders author a letter in The Lancet – a medical journal published since 1823 – saying Havasupai do not have the same blood marker for diabetes that earlier was found in Pima people.
July 1992: ASU master’s student Denice Fenger submits her thesis on diabetes in the Havasupai population.
July 2, 1992: ASU nutrition professor Vaughan applies for a research grant from the American Dietetic Association to study food behaviors of the Havasupai.
1993: Martin publishes a paper on inbreeding using 36 handprints of Havasupai members. He does not get approval for this research from the Institutional Review Board, nor consent from the tribe.
1994: An accident in Markow’s research lab involving a liquid nitrogen tank destroys Havasupai blood cell lines. DNA is later “rescued” so research can continue.
Mid-1990s: Havasupai blood samples and cell lines are sent from Markow’s lab to other universities and private labs around the country, contrary to the promise they would be kept “under lock and key” at ASU.
November 30, 1994: A journal entry of doctoral candidate Chris Armstrong says he was ordered to “lie” to tribal vice chairman Rex Tilousi, who was touring the ASU lab. Markow denies the allegation but eventually admits she “instructed Chris that it was premature for him to discuss such a study with members of the population.”
May 1996: Armstrong submits his dissertation on schizophrenia. He uses 69 Havasupai specimens in his underlying research.
April 16, 1997: Armstrong raises concerns that Havasupai blood is being misused for unauthorized studies to ASU’s vice president of research, as well as chairs of the biology and philosophy departments.
April 29, 1997: Martin sends the tribe a letter summarizing the project and alludes to other research. Although this letter has been cited as a “disclosure” to the tribe of the schizophrenia research, it is obliquely written and seems to end by denying that other research was conducted.
June 9, 1997: ASU legal counsel Nancy Tribbensee sends a letter to Armstrong claiming that his allegations against Markow and the misused Havasupai blood are unfounded.
June 18, 1997: Armstrong e-mails Tribbensee, saying he is frustrated ASU has ignored his concerns and threatens that public disclosure would be damaging.
January 26, 1999: Armstrong is indicted on drug distribution charges. He admits he already had an alcohol and drug problem while at ASU. He is sentenced to 37 months in prison.
May 26, 2002: Markow submits an application for human research with Havasupai bloodlines, on behalf of doctoral student Daniel Garrigan, to study migration patterns of Native ancestors. ASU’s Institutional Review Board approves it two days later.
July 1, 2002: Michael Crow succeeds Lattie Coor as president of ASU. Martin is pleased to see the new president wants ASU to become “the place to go” for North American Indian Studies.
July 1, 2002: Michael Crow succeeds Lattie Coor as president of ASU. Martin is pleased to see the new president wants ASU to become “the place to go” for North American Indian Studies.
March 4, 2003: Havasupai member and ASU student Carletta Tilousi attends Daniel Garrigan’s dissertation presentation and realizes Havasupai blood was used for research besides diabetes. She informs the tribe.
March 14, 2003: Martin advises the Tribal Council that he thinks ASU may have mishandled Havasupai blood samples.
May 8, 2003: The Havasupai Tribal Council approves a “Banishment Order” that forever bans anyone from ASU setting foot on the reservation. It is the first banishment order in the tribe’s history.
May 11, 2003: In an “urgent” memo to ASU President Michael Crow, Martin warns the tribe is poised to call a news conference that will “seriously embarrass ASU” by making public their charges of misused blood. Martin ominously says, “I believe the charges to be true,” and begs Crow to personally intervene.
May 13, 2003: The ASU attorney’s office faxes the tribe a letter declaring ASU will fund an independent investigation. Based on that promise, the Tribal Council calls off its news conference. ASU hires attorney Stephen Hart, the former executive director of the Arizona Department of Gaming, to conduct the probe.
August 15, 2003: In an interview with Hart, Markow claims she had consent forms for the draws from 1991 to 1994 but “lost” them when she moved from ASU to the University of Arizona in Tucson. Hart finds evidence showing those consent forms never existed.
September 5, 2003: A preliminary report on the Hart investigation is presented to the tribe and ASU, confirming the Havasupai’s worst fears.
September 8, 2003: Tribal attorneys send a notice-of-claim to Attorney General Terry Goddard, alerting the State of Arizona that a lawsuit is coming. But this notice does not include a dollar amount, as required by law, and widely will be seen as “deficient.”
December, 2003: The final Hart Report is presented, including 34 interviews, 319 exhibits and about 4,000 pages of attachments. It exposes the inner workings of the research project.
March 5, 2004: Tribal attorney Robert Rosette amends the initial notice of claim, specifying a demand from the tribe for $50 million to settle the case.
March 12, 2004: Carletta Tilousi and several other tribal donors file a formal complaint in Coconino County Superior Court. The tribe itself follows with its own suit shortly after. The Arizona Board of Regents has the cases moved to federal court, where they’re dismissed on procedural grounds. The cases go back to state court in Coconino County, then are transferred to Maricopa County.
March 24, 2006: The Inter Tribal Council of Arizona, representing all the state’s tribes except the Navajo Nation, passes a resolution supporting the Havasupai and warning this has “repercussions on future research projects between ASU and Indian Nations.”
October, 2006: The National Congress of American Indians, the oldest and largest association of tribal governments, passes a resolution that “admonishes Arizona State University and the State of Arizona for the apparent fraud on the Havasupai Indian Tribe by knowingly misrepresenting the purpose of the blood draws as diabetes testing in order to get access to the Tribe’s genetic material.”
April 30, 2007: Maricopa County Superior Court Judge Janet E. Barton dismisses the Havasupai lawsuits, saying a new interpretation of the notice-of-claim law applies retroactively to this case, filed five years earlier. The tribe appeals.
May 30, 2008: The Inter Tribal Council of Arizona tells Governor Napolitano, “It is disheartening to tribes in Arizona, which have generously contributed to Arizona’s universities in recent years, that after two years, there is still no resolution to this matter.”
June 11, 2008: The Arizona Court of Appeals hears arguments on reinstating the Havasupai’s claims. As of press time, the Appeals Court decision was pending. The only issue before the court is whether the tribe filed proper notice and therefore has the right to sue the state. The merits of this case have never been argued in court.