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Indian Givers

Valerie Sebring

Carletta Tilousi got a phone call in March 2003 that would not only change her life, but that of every person in her tribe.

She's a member of the Havasupai, a small Indian nation in northern Arizona with about 650 members. Most of the tribe lives in Supai, a picturesque village tucked away on the floor of the western Grand Canyon.

The call came from John Martin, a longtime anthropology professor at Arizona State University who had gained the tribe's trust, as much as any white person can.

The tribe had allowed Martin in its midst because members thought he could help them with their diabetes epidemic. After spending more than a year in Supai in the early 1960s, he published his doctoral dissertation on the tribe at the University of Chicago.

Tilousi says Martin told her that a student was about to defend another dissertation on a subject that would be of interest to her.

"John said that the guy had used our tribal blood in his research," she recalls. "I said, 'What?!'"

Her curiosity piqued, Tilousi attended the presentation at ASU. About 30 others also showed up, including Martin and Therese Markow -- a nationally known genetics-research professor, formerly of ASU, who had sponsored the doctoral candidate.

Tilousi listened intently as Daniel Garrigan discussed his work, which had included use of about 100 Havasupai blood samples: "He spoke about how the DNA of this isolated, intermarried group of people -- us -- was unique, and how my people had migrated to Arizona from Asia."

Non-tribal members might wonder what could be so offensive about a researcher explaining how Indians once had crossed the frozen Bering Straits into North America.

But to Tilousi and others in her tribe, that was like a scientist asking Christians from Nazareth to give blood for a diabetes study, then producing research to suggest that Jesus never existed. She was raised to believe that the retreat of waters from a global flood had carved the Grand Canyon, and that the Canyon is the birthplace of the human race.

"I knew we wouldn't have given this guy or anyone permission to do that study," says the 33-year-old Tilousi, one of few Havasupai to have earned a college degree. "I started to think, 'How dare this guy challenge our identity with our own blood, DNA.' Then I remembered when many of us gave blood years ago for a diabetes project. I wondered if this was the same blood."

She spoke up during the question-and-answer period: "I said, 'I'm from the Havasupai tribe, and I want to know if you asked us permission to do this study.' [Garrigan] was really nervous. He said no, not to his knowledge."

Tilousi recalls John Martin then saying something prophetic -- because a conflict of cultures was about to erupt:

"'The blood bath will start right now.'"


News of the ASU/Havasupai blood war reached the public last February, in the form of a lawsuit filed in Flagstaff's Coconino County Superior Court.

Tribal members sued shortly after completion of a comprehensive investigation by Phoenix lawyer Steve Hart, which ASU commissioned (with Havasupai approval) soon after Carletta Tilousi's outburst at the dissertation defense.

The suit names 75 Havasupai who may have been among those from whom ASU researchers collected more than 400 blood samples in the early 1990s. The defendants include John Martin, Teri Markow and the university itself.

Filed by attorneys Al Flores and Tilousi's husband, Robert Lyttle, it claims ASU researchers "went beyond all possible bounds of decency . . . so as to be atrocious and utterly intolerable in a civilized community."

Legal hyperbole aside, a New Times analysis confirms the tribe's allegations on crucial points, and raises questions about the complex intersection of modern science and the cultures of indigenous peoples.

Most unsettling is that the ASU researchers duped the Havasupai into giving blood under a pretext that the tribe's diabetes epidemic was their sole concern.

Instead, Teri Markow and others also used the blood to study tribal schizophrenia, inbreeding and migration patterns, without getting proper (or any) permission to do so.

"They challenged our identity and our origins with our own blood and without telling us what they were doing," says Carletta Tilousi. "We aren't just Indians griping about whatever. If this were someone else's blood being misused, I think it would hit home for them, too."

That said, all would have been fine if the Havasupai had approved the research projects.

Tribal members interviewed by New Times for the first time say they feel as if the researchers used them as unwitting guinea pigs, as human specimens.

As a chilling example, they point to an as-yet-undisputed piece of evidence first revealed in the Hart Report:

 

In 1990, Teri Markow assigned a young psychiatrist to look for diagnoses of schizophrenia in tribal medical records at the Supai clinic. That doctor, Kevin Zuerlein, admitted he did just that, alone at night, without tribal permission, after the clinic closed.

Zuerlein says he saw no unusual prevalence of mental illness in the 100-plus files he'd scanned, a finding that frustrated Markow.

But records show that Markow and Chris Armstrong -- then her top doctoral assistant and also a central player in this tale -- continued with their clandestine (as far as tribe members were concerned) schizophrenia work for more than five years.

The lawsuit also alleges that the ASU researchers erroneously destroyed some of the tribal blood, and allowed "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."

It says 23 academic papers, articles and dissertations have been published using Havasupai blood as primary source material. Fifteen of those treatises focus on schizophrenia, inbreeding and migration, not diabetes.

John Martin and another co-defendant, Daniel Benyshek, have accused Teri Markow of misleading them and the Havasupai about the nature and extent of research she directed and endorsed, and for which she won grant funds from several sources.

Markow has denied wrongdoing.

Speaking for Markow, Tucson attorney Mick Rusing would say only that "this has turned into a sad situation for many people. I don't know why it had to come to this, a lawsuit, but I guess that's how things go."

The allegations are hardly analogous to the infamous Tuskegee Syphilis Experiment, when U.S. Public Health Service doctors deceived and denied treatment to hundreds of infected black Alabama sharecroppers.

Instead, the suit claims that tribal members have endured "severe mental and emotional harm, suffering, fright, anguish, shock, nervousness and anxiety."

Says Louise Baca, a psychology professor at Argosy University in Phoenix, "Think of how devastating it would be to learn that you unknowingly gave your blood for studies that went against your entire belief system of origin. What's really sad is that many people built their careers off the blood of these indigenous people."

Russel Barsh, a researcher, professor and lawyer currently working with a tribe in the state of Washington, says, "It's typical for the motivation to be the researcher's academic advancement rather than either money [through] patents or medicine."

That motivation seems to have been the case with the Havasupai blood project.

Nothing suggests that Teri Markow enriched herself financially off the myriad projects that she led or sanctioned. However, in the years after the blood project began, Markow became a regents' professor -- the highest level in the state's university system -- and won acclaim as one of the nation's top scientists.

But Ken Iserson, director of the Arizona Bioethics Program at the University of Arizona College of Medicine, sees things differently:

"The big picture here is: Who is out for fame and fortune? It looks like attorneys throwing one big mud ball at an institution, ASU in this case, and hoping something will stick. The complaints about the migration studies sound just like the Scopes trial, when science butted heads with the creationists. If a tribe has faith, it has faith. A study shouldn't change that."

Counters tribal member Roland Manakaja:

"Yes, I still believe what I believe. It was wrong of them to use my blood for whatever they used it for without my permission. We were just trying to get help for our diabetes, nothing else. How can we trust anyone anymore?"


Two elderly Havasupai men sat on a wooden bench in Supai's dusty center last month, chatting intently in their native language.

Clumps of tourists in casual hiking gear strolled by on their way to the spectacular series of blue-green waterfalls that attracted about 25,000 visitors last year.

It's not easy to get here: Supai is accessible only by hiking or riding a horse eight miles one way downhill, unless you can afford a helicopter ride.

And what were the men talking about, according to a Tribal Council member who was showing New Times around the village?

Not the big lawsuit against ASU.

They were debating whether Michael Jackson was guilty of all those child-molesting charges.

"We are interested in the world out there, but we have our own world, too," explains Dianna Uqualla, tribal vice chairperson. "We are not different than anyone else. We have one heart, one mind, and Creator made us all equal."

Like many Havasupai, Uqualla lived outside Supai for years before returning several years ago.

 

"This is home," she says. "Supai."

The village sits at a bend in Havasu Canyon where a southwest branch of the canyon widens and the mighty Colorado River long ago etched a wide flood plain. Layers of stunning red cliffs tower high above and around the 518 acres onto which the feds confined the Havasupai in 1882. In 1975, Congress returned nearly 200,000 acres to the tribe.

It truly is like stepping into a different world.

Supai has no cars or paved roads, much less lucrative casinos. Havasupai youngsters attend a village school through eighth grade, then must leave for Indian boarding schools scattered around the nation.

The tribe's high school dropout rate is extremely high. Most of the dropouts (and graduates, too) eventually return to Supai, where the unemployment rate also is high. Those with jobs work in the tourism industry or for the tribe.

A general store, cafe, post office, school, new community center and the medical clinic all are within shouting distance. A quaint Christian church and the refurbished 24-room Havasupai Lodge are up the path.

Other than the satellite dishes at many homes, four-wheelers, and the insistent beat of reggae music, longtime residents say things aren't terribly different in Supai now than they were four decades ago, when anthropology student John Martin first stepped into the village.


Without John Martin's assistance, Teri Markow surely wouldn't have gotten anywhere in Supai.

"John knew the Elders and they put their trust in him," says Rex Tilousi, a tribesman and 60-year-old park ranger at the Grand Canyon. "My father's father never had diabetes. Then my dad started getting it, and he couldn't see on the trail anymore. Then mom got it. Now my wife has it. We thought John could help us."

These days, however, many tribal members hold Martin personally responsible for what researchers have done with the blood.

"The Elders always told us to be careful of anthropologists," Carletta Tilousi says. "But we let John and his partners into our intimate lives, and he stabbed us in the back."

Martin said little to New Times in response, other than to assert that the anger against him is misplaced. He said Teri Markow's role "should speak for itself," which is far less specific than what he told attorney Steve Hart in an interview last year.

Then, he called Markow "arrogant and reckless," and blamed her for destroying the relationship between the tribe and researchers.

By Martin's account, two Havasupai women (one of them was Rex Tilousi's late sister, Mabel Hanna) asked him at a picnic in 1989 to help stem the tribe's growing incidence of diabetes.

Everyone in Supai -- everyone -- has lost a family member to the disease and knows many others who currently suffer from it.

Scientists say diabetes is caused by environmental and genetic factors. Certainly, the high-fat, sugar-laden diets common to many tribes have been a prime cause of childhood obesity and onset of the disease.

Researchers also have investigated the possibility that Native Americans may possess a specific "diabetes gene" that kicks in under certain conditions. The thinking is that those who carry that gene might be warned to change their lifestyle, particularly with diet and exercise.

In other words, people may not be doomed, as one researcher has said, "to play out the hand nature dealt them."

Martin contacted two ASU professors soon after he returned to the Valley in the late summer of 1989.

He asked nutrition professor Linda Vaughan if she'd be interested in working with him on a diabetes project. He also recruited zoology professor Markow, a rising star at the university.

Markow hadn't published papers on diabetes. But she was ASU's only human geneticist at the time, and already was known for winning research grants.

Markow later would claim that Martin had lured her by mentioning the allegedly high incidence of schizophrenia in the Havasupai. She said Martin told her how he'd traced the disease back to a common tribal ancestor -- a shaman who'd died around the start of the 20th century.

But Martin says he told her that the tribe probably wouldn't agree to a schizophrenia study, at least at first.

Bill Freeman, a physician and former director of research for Indian Health Service, says it's rare for any tribe to participate in mental-health studies.

"Schizophrenia is a stigmatizing condition, and we're not talking about tomorrow's stigmatization, especially with a small tribe like [the Havasupai]," says Freeman from his home in Bellingham, Washington. "No one wants to be known as the, quote, 'crazy tribe.' Doing that kind of research without specific permission from the subjects is a real harm."

 

In the fall of 1989, Markow and Martin applied for funding with ASU's vice president of research. Their application focused solely on diabetes -- blood collection and genetic research, along with education of tribal members about the disease.

ASU appropriated $24,420 for the educational pilot program, after which a dozen Havasupai women spent the summer in Tempe taking classes on nutrition and diabetes.

Martin has said the university later appropriated $240,000 for three years of research on diabetes.

Markow also was working hard on other fiscal fronts. That September, she applied with the nonprofit National Alliance for Research on Schizophrenia and Depression (NARSAD) for grants to study schizophrenia at Supai.

Calling the tribe a "unique patient population in Arizona," she wrote that the project would provide "an unprecedented opportunity for mental-health research." She said John Martin could provide her with tribal genealogical and demographic records dating from 1896.

Markow claimed Havasupai medical records had revealed "an incidence of schizophrenia of 7 percent, seven times the incidence in the general population of the U.S."

In the rarefied world of scientific research, "seven times" was a doozie of a difference. But no one is sure where Markow came up with her statistics.

Schizophrenia experts and Indian Health Service officials tell New Times they know of no studies about the prevalence of the disease in the Havasupai or in any Arizona tribe.

In March 1990, Markow, Martin and Vaughan made a formal pitch at a meeting of the Tribal Council. An agenda shows they were there to discuss a "diabetes" project, for which the council gave them a unanimous go-ahead.

Less than two months later, on May 1, 1990, Teri Markow won a Distinguished Investigator award of $92,880 from NARSAD to study schizophrenia in the Havasupai.

The Tribal Council never was told about that funding, or about the schizophrenic component of the budding project.

But that summer, the collection of blood from the Havasupai began.


Informed consent, a concept that looms large in this article, means someone hasn't been tricked or coerced into participating in scientific research.

Scientists are responsible for informing their "human subjects" about what's happening with a project -- before, during and after.

That can be difficult when a person's culture and language are so different from that of mainstream America, such as a member of a remote Indian tribe.

That's where a university's Institutional Review Board (IRB) comes into play. Such boards are supposed to review clinical research protocols before studies begin, then to monitor changes as a project progresses.

In 1987, Carol Jablonski, then the board's coordinator at ASU, wrote a how-to pamphlet on informed consent. She urged consent forms to "be written in a language easily understood by the subject" and that subjects "should know the purpose or objectives of the research."

Jablonski also advised researchers to inform their subjects of all foreseeable risks, including psychological and sociological. According to her brochure, the titles on the consent forms "should be identical with the project title filed with the Institutional Review Board."

In the Havasupai blood project, both the researchers and the ASU board dismally failed the "human subjects."

The title on the consent form that Teri Markow's assistants showed to the tribal members in the summer of 1990: "Medical Genetics at Havasupai."

The title of the first project that Markow later submitted to ASU's human-subjects board: "Schizophrenia in the Havasupai."

Markow got her project rolling months before receiving official approval from ASU for human-subjects projects involving the tribe.

Before asking for signed consent from interested tribal members that summer at Supai, the researchers allegedly read to them from a script prepared by Markow.

The oral presentation did mention schizophrenia, however obliquely, saying in part, "We are conducting research to try to identify factors that cause some of the health problems experienced by the Havasupai and other Native American peoples. Many of these diseases, such as diabetes, schizophrenia, depression, are complicated and so we try to look at as many factors as possible."

The researchers promised tribal members that "no one's name will appear on the tubes containing the stored blood," a vow later broken when at least two labs received Havasupai blood with names taped on the vials.

The written consent form was even less precise than the oral presentation that had preceded it. The form said the purpose of the blood project was to "study the causes of behavioral/medical disorders."

That raises another issue. A pamphlet published by the National Institutes of Health from the time said "consent documents should be written so they are understandable to people who have not graduated from high school."

 

Most of the Havasupai who were asked to give blood hadn't graduated. Many were barely literate in English. Still, more than 100 tribal members signed up in the summer of 1990 before donating their blood.

Markow told attorney Steve Hart last year that the signatures gave her and fellow researchers freedom to do what they wished with the Havasupai blood. And that's what she did for the next decade or so until Carletta Tilousi stirred things up at ASU in 2003.

All but one bioethics expert contacted by New Times agreed that Markow's written informed consent form was grossly inadequate.

But the University of Arizona medical school's Dr. Ken Iserson says the document sounds fine to him.

"Are these people so isolated that they couldn't possibly understand what they were signing?" Iserson says of the Havasupai. "Clearly, children and the mentally impaired are a 'vulnerable population,' but a whole tribe? These people would have already had a major distrust of outsiders. The barriers already would have been up."


In the spring of 1990, Kevin Zuerlein was a medical student on a rotation in psychiatry at Phoenix's Maricopa Medical Center.

Teri Markow asked the head of the hospital's residency program if she could borrow someone that summer to tend to the medical clinic in Supai.

The 29-year-old Zuerlein was available. He says he met with Markow and John Martin several times before going to Supai.

Zuerlein says his mission that summer was twofold: help collect blood from participating tribal members, and review Havasupai medical records for evidence of schizophrenia.

Zuerlein spent about a month in the village, sleeping on a cot inside the little clinic. By day, he and a female tribal member would collect blood from those who agreed to participate in the new project.

Then, after the clinic closed for the day, Zuerlein would pore over the tribal medical files, looking for histories of schizophrenia. He says he never asked the tribe for permission to look at the records, nor did he inform anyone in Supai that he'd done so.

Zuerlein says the files didn't reveal especially high levels of psychiatric distress. He reported the findings to Teri Markow, and gave her his notes on more than 100 tribal members.

Interestingly, David Morgan -- who in 1990 was a director at Indian Health Service with oversight responsibilities in Supai -- told Steve Hart last year that he'd never heard of Kevin Zuerlein.

Morgan insisted that no one from his agency would have authorized the kind of review of patient files that Zuerlein conducted. He did recall having met with the ASU researchers in 1990 to discuss the diabetes project, but said he never heard anything about schizophrenia research.

In January 1991, months after the first blood draws and the late-night file runs by Zuerlein, the ASU human-subjects board finally approved Markow's study proposal.

It was titled "Schizophrenia: A Genetic Model," and was supposed to last three years.

Two months later, the board approved two more Markow projects involving the tribe: "Diabetes in Havasupai" and "Stress Following the Havasu Flood."

John Martin expressed excitement about the so-called "Diabetes Project" in an April 19, 1991, letter to then-tribal chairman Don Watahomigie: "[U.S. Senator John] McCain's office has also learned of this," he wrote, "and he would like to make the ASU/Havasupai project a legislative priority if he can get some PR out of [it]."


Chris Armstrong had an epiphany in the spring of 1989, while attending ASU as a graduate student in molecular genetics.

Armstrong's mother recently had died at the age of 52 after suffering from schizophrenia for years. He says he saw a woman having a psychotic episode on a street corner in Tempe, and flashed on his mother.

After he rendered assistance, Armstrong says he wept in his car, and decided on the spot to change his course of doctoral study to mental illness and genetics.

Some months later, Armstrong's faculty adviser steered him to Teri Markow, who was talking up an upcoming project involving schizophrenia in an Indian tribe.

Says Armstrong, who now works at an epidemiology lab in St. Paul, Minnesota, "She opened up to me about John Martin living with [the Havasupai] and how she was going to work on diabetes and schizophrenia in the tribe. She said Martin had told her that everyone down [in Supai] is crazy, and that she had consent to study schizophrenia. It was a perfect situation for me."

In September 1991, Markow submitted a grant proposal on behalf of Armstrong with the federal Department of Health and Human Services. It listed two research goals, both schizophrenia-related.

 

Markow wrote in her application of working "closely with the Indian Health Service in dealing with genetics of various disorders in the Havasupai and other Native Americans."

She noted that her research materials would be blood, surveys and "Indian Health Service clinic data" -- she may have been speaking of Dr. Zuerlein's file raids.

Markow also wrote that she and Armstrong wanted to study schizophrenia "in a population with a high incidence of psychosis."

Of Armstrong, Markow wrote, "He takes the initiative on all fronts . . . he has a good sense of what the interesting problems are in science and how to approach them."

Armstrong also was to be responsible for processing the Havasupai blood at the ASU lab. That included growing "cell lines" for eventual extraction of DNA from that blood.

The cell lines, white blood cells, actually, are a source of DNA, and can grow and replicate in laboratory settings outside of a living organism.

Armstrong says he needed specific information on tribal members diagnosed with schizophrenia for his research to work. But he never got enough data to complete what he'd originally envisioned.

Instead, he later used the tribal blood to tackle a more general study of the disease.

Armstrong went to Supai in the summer of 1991, his sole visit to the village. He says Markow instructed him not to say anything about schizophrenia to tribal members on his trip. That bothered him at the time, but he'd gone along with his mentor.

By then, ASU graduate student Dan Benyshek was collecting blood in Supai for the ongoing project. Some tribal members were donating for the second time, others for the first time.

Records indicate that Benyshek collected blood from about 200 Havasupai in Supai from 1991 to 1994. He took so much blood that tribal members dubbed him "Dracula."

Benyshek told attorney Hart that, at the suggestion of tribal members, he'd never asked anyone in Supai to sign a written consent form before giving blood.

To the contrary, Markow said she'd collected dozens of signed consent forms from Benyshek. But when asked to produce the documents, she said she'd lost them while moving to the University of Arizona in the mid-1990s.

On the advice of his attorney, Benyshek -- now an anthropology professor at the University of Nevada-Las Vegas -- declined to speak with New Times. But logic dictates that he had no motivation to fib about the lack of written consents.

Benyshek did provide Steve Hart with a re-created script of what he allegedly told tribal members in Supai before taking their blood.

The script said the samples would be taken to ASU for testing of blood-sugar levels and to "look inside some of the cells in the blood." On the latter, Benyshek told Hart he was referring to the DNA research on a possible genetic tribal link to diabetes.

Benyshek informed Hart that he'd never mentioned schizophrenia to tribal members because he didn't know anything about that part of the project. He said he'd told the donors that he'd tell them about their diabetes test results, which he did.

Back in Tempe, Armstrong's personal problems -- he then was a big drinker -- were starting to surface.

He says one reason for his growing unhappiness came after Markow told him to lie to tribal leader Rex Tilousi about the extent of the "diabetes" project.

Armstrong says that happened, probably in 1993, while Tilousi was at ASU to speak to one of John Martin's anthropology classes. Martin apparently let Markow know he wanted Tilousi to see how the blood project was faring at the lab.

"Teri instructed me not to mention the word schizophrenia to Mr. Tilousi," Armstrong says. "She told me it was for the tribe's own good, not to scare him. I was supposed to keep talking about diabetes this, diabetes that. So I lied."

Markow has denied Armstrong's allegation.

But Tilousi's account to New Times of his visit to the ASU lab matches Armstrong's, and both men say separately that they haven't spoken since that memorable day.

"I remember asking [Armstrong] how things were going with the project," recalls Tilousi, who is Carletta's uncle. "He told me that he was working hard on the diabetes, the diabetes, and that this is it."

Months after Armstrong says he lied to Rex Tilousi, disaster struck inside the blood lab. The freezer that contained the precious Havasupai cell lines ran out of liquid nitrogen, and many of the lines died.

Armstrong had extracted the lines from tribal blood -- usually five vials of cells per person. But he neglected to put the lines in a different cooler as a precaution, which was a serious blunder. (The DNA was kept in a refrigerator and remained unharmed.)

 

Armstrong takes the blame for the cell fiasco, but says it wasn't his responsibility to monitor the nitrogen levels. Markow has said it totally was his fault.

No one told the tribe what had happened.

Armstrong says Markow wanted to fire him after the disaster at the lab. That's true, she told Steve Hart last year, and it was only through the intervention of another professor that Armstrong had kept his job.

Another scientist rescued some DNA from the crashed cell lines, so all wasn't lost. But tensions between Markow and Armstrong remained palpable.

In late 1994, Armstrong began to keep a diary about his continuing struggles with Markow. That November, he wrote, "At the time [I lied to tribal members], I knew it was wrong, but I . . . thought that I might be able to contribute major breakthroughs to schizophrenia genetics and that that was a 'higher good' they might not understand. Teri said I had to lie to them because they don't have any idea of what schizophrenia is."

Though Markow has been insistent that Chris Armstrong wasn't working on schizophrenia in the Havasupai after 1990-91, records show otherwise.

In June 1995, Markow co-sponsored Armstrong in a grant application with the National Institute of Mental Health (NIMH): "The research Chris has done this year will lay the foundation for very significant advances in combining population genetics theory with schizophrenia epidemiology."

The agency soon awarded a grant of $4,336, good for three more months of work. Also that June, Markow successfully sponsored Armstrong for a $12,000 research grant with the Scottish Rite Schizophrenia Research Program.

However, the foundation rejected Markow's own funding request for diagnosing schizophrenia in the Havasupai.

Armstrong says he received about $37,000 from NIMH over four years that ended in 1995.

"So Teri now is saying that the schizophrenia research just faded away?" Armstrong says. "She's wrong. She was all charged up about schizophrenia. And if she'd gotten money from Scottish Rite, she would have gone for it in a second."

Armstrong won his doctoral degree from ASU in May 1996. He moved to Washington University in St. Louis to study families afflicted with mental illness.

By then, Markow had relocated to the University of Arizona, where she became the director of the Center for Insect Science. She took the remaining Havasupai samples with her to Tucson, though tribal members had been promised in writing that their blood would remain "under lock and key" at ASU.

John Martin said last year that he'd thought the Havasupai blood project was finished by 1996-97, especially after the cell lines disaster and the inability of researchers to find specific genetic links to diabetes in the tribe.

He said he didn't know that, for years, Teri Markow had been sending the Havasupai samples to researchers around the nation.

Among the recipients were scientists at Stanford University and at a for-profit pharmaceutical laboratory in California. A renowned scientist at the pharmaceutical lab later gave some of his samples to a doctoral candidate working on migration studies.

None of these researchers specifically was interested in studying diabetes or, for that matter, schizophrenia. Many wanted to trace the tribe's origins by comparing the DNA of tribal members with that of other groups, including some from Asia.

And none of the secondary researchers asked permission to use the Havasupai samples, either from the tribe or from a human-subjects board.


The lies he'd told the Havasupai continued to eat away at Chris Armstrong after he left ASU.

On August 13, 1996, he mailed Teri Markow a letter in which he expressed his state of mind.

"Who knows what path my life would have taken if you would have acted honestly from the start?" he wrote. "It's doubtful I would have worked for you because you never would have gotten the tribe to submit DNA samples to study schizophrenia."

Finally, in early April 1997, Armstrong spelled out his allegations in a series of letters to ASU officials. The correspondence soon found its way to Nancy Tribbensee, deputy general counsel at ASU and a non-voting member of the school's human-subjects board.

Barely two weeks after Armstrong's first letter to the university, John Martin sent his own seven-page account to the Havasupai Tribal Council. It had been years since he'd spoken to its members about the blood project, Martin wrote, in part because he'd been caring for his ill wife.

Martin then told the council that Teri Markow -- "well known for her work on inherited diseases such as schizophrenia" -- had found funding years earlier for collection and processing of the blood. (He didn't mention that NARSAD, the schizophrenia charity, had been a major funding source.)

 

In his 1997 letter, Martin recalled that tribal members had told him years earlier that they only were interested in diabetes research. Teri Markow had respected that, Martin reassured the council.

Martin soon sent a handwritten note to ASU attorney Tribbensee claiming that "while the Tribal Council was comfortable with behavioral-health research (alcoholism, schizophrenia, etc.), individual members were not interested, so we dropped that line of research."

Where he got the idea that the Tribal Council had been "comfortable" with that kind of research is uncertain.

Several Havasupai tell New Times that John Martin knew about Markow's ongoing efforts to study schizophrenia in the tribe.

"John was covering his butt with the letters to us and to ASU," contends Carletta Tilousi.

Tribbensee slammed the door on Armstrong's allegations with a terse June 1997 letter that ended, "I find no evidence to support the serious and defamatory allegations that you have made against Dr. Markow."

Armstrong says he soon decided to try to put the blood affair behind him. "ASU had a chance to self-correct and make things right at that time," he says. "They chose to drop the ball."

In January 1999, a federal grand jury indicted the troubled scientist on charges of smuggling cocaine across state lines. Armstrong admits he was guilty. A judge later sentenced him to three years in prison.

While Armstrong was still incarcerated in December 2001, President George W. Bush announced that Teri Markow was one of 10 scientists nationwide to win the Presidential Award for Excellence in Science, Mathematics and Engineer Mentoring.

The National Science Foundation award includes a $10,000 prize.

Markow was honored "for work done at Arizona State University."

Effective last October, Markow collected $1 million in two new grants from the National Institutes of Health for projects titled "Post-Doctoral Excellence in Research and Teaching."

Chris Armstrong moved to the Twin Cities area after his parole in 2002. He now works at the University of Minnesota School of Public Health studying victims of strokes and heart attacks.

Out of nowhere last year, he says, he got a call from a Phoenix attorney about his role in the Havasupai blood studies. It was Steve Hart, whose investigation into the schism between the tribe and the university was under way.

After a short dance (Armstrong briefly requested compensation from Hart, who declined to accommodate him), Armstrong told his astounding story, which he later repeated to New Times in extensive interviews.

And what of Kevin Zuerlein, the young psychiatrist who found himself rifling through files in Supai back in 1990?

Earlier, in January 1996, the Arizona Medical Board revoked Zuerlein's license to practice medicine because of repeated alcohol and drug use.

Then, in April 1999, Maricopa County court records show, a grand jury indicted Zuerlein on felony charges of forgery and attempted theft. The charges were unrelated to Zuerlein's adventures in Supai. He later pleaded guilty to reduced charges and was put on probation.


Minutes after Carletta Tilousi spoke up at ASU last year, officials asked her to attend a private meeting that day with key players in this story.

"Dan Benyshek and John Martin were attacking Markow on the informed-consent issue," she recalls. "Martin was pounding the table, his face was red, and he was saying, 'We did not get informed consent to do all this and you know that, Therese Markow!' She said, 'I have a stack of informed consents this high.'"

A few months after that meeting, Martin sent a memo marked "urgent" to ASU president Michael Crow about the simmering feud. He advised Crow about the anger that tribal members were expressing toward ASU, and wrote, "I believe [their] charges to be true."

He suggested that Crow personally should hear the Havasupai complaints and make reparations to tribal members before the story went public.

Crow didn't bite.

As the revelations about the blood emerged, the Havasupai halted all medical and scientific research in Supai. That included a new diabetes/nutrition undertaking that John Martin had been working on with the tribe and another ASU professor.

But not everyone in the tribe considered Martin a bad guy. Last August 26, then-Tribal Council chairman Don Watahomigie thanked the professor in writing "for bringing to the attention of the Havasupai Tribal Council and ASU the allegations about the use of Havasupai blood specimens in unauthorized research projects. Your courage in doing so is appreciated beyond words."

Two months later, the tribe voted Watahomigie and two others out of office. Among those winning election to the council was Carletta Tilousi.

 

Many sources interviewed for this story say it's understandable, but unfortunate, that the tribe has shut down all research projects on the reservation. Those sources note that legitimate scientific studies long have helped Native American tribes.

But Paul Spicer, a professor in psychiatry at the University of Colorado Health Sciences Center (and an expert in Native American issues), says he appreciates why the Havasupai won't have anything to do with research right now.

"Absolutely shocking things have been alleged here," he says, "and hiding the true nature of some research projects from the tribe is a strong basis for a lawsuit. Because of this kind of thing, many tribes remain un-persuaded that improvements in health care are right around the corner, if at all."

New Times asked several Havasupai plaintiffs what they'd like ASU to do, short of cutting them a big check. Tribal vice chair Dianna Uqualla became tearful when trying to answer.

"First, I would like all of the blood returned to us," she says. "There are people, loved ones, who gave blood and who have passed away. But their blood is still out there somewhere, I think. Blood is very important to us. We need a ceremony with ASU officials present to bury that blood."

And Rex Tilousi, the park ranger who was lied to at the ASU lab, says he's not sure how to answer that question.

"All I know is I feel like we turned students into doctors, turned students into professors. All this education we got for so many people," Tilousi says. "I just don't see what we got out of all this."

E-mail paul.rubin@newtimes.com, or call 602-229-8433.


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