Sad sad science

March 26, 2009 at 4:02 pm Leave a comment

It is sad cases like this that give science a bad name.  The person at the center of this scandal is the UA’s own darling Regents Professor Markow, now transitioning to UCSD.

This case is important for many reasons.  I have always asked why in our lab we don’t study more Native American DNA.  The response from everyone, even those who are just visiting from other schools, is always just two words, “Terry Markow.”  I decided to look into this.

If the allegation prove to be true, and the evidence appears to point that way, then this is a sad abuse of her power and responsibility to the community she is supposed to be helping out… not damaging in the way she has.

Therese Markow

Below are some excerpts from an in-depth article on this topic. You may know some of these people…

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.

Arizona’s Broken Arrow – Phoenix Magazine .

Chris would also go through the clinic’s records at night:

Between 1990 and 1992, more than 200 blood samples were drawn. An assistant to Markow actually slept in the Supai medical clinic while gathering the samples. At night, he clandestinely examined the clinic’s records, looking for reports of schizophrenia among tribe members, according to court records.
– via Arizona Republic
Former Havasupai chairman and his wife

What about the impact to the Havasupai? I think it is sad what has happened, and it is sad that those that abused their trust will probably get away with it.

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.

Wescogames

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.”

What happened?

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.”

– via Arizona’s broken arrow – Phoenix Magazine

Supai village

Supai village at the bottom of the Grand Canyon

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Entry filed under: Culture, Math and science. Tags: , , , , , , , , .

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