Blood 3

Apr. 24th, 2010 06:52 pm
purejuice: (Default)
Here, in Phoenix magazine, in an incredible piece by Jana Bommersbach, is much, much more of the Havasupai blood sample story. It is devastating. Therese Markow -- who told one Arizona paper that the Havasupai's claims against her were "hysterical" -- was found to be lying from day one by an independent investigation, deviating from protocols, not securing proper releases, or, after the first round of blood samples, not securing any releases at all -- one of the very many things Markow lied about, for 20 years, with impunity.

Thanks to [ profile] oneroom for winnowing this out of the intarnets. There is nothing like the facts of the case.

Therese Markow, who actually had the balls to wear turquoise for this photograph. In the Navajo creation myth, the sun was created from turquoise and it has many other sacred uses.

Bommersbach writes:

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.

....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.

....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.

....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.

....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.”

....[Carletta Tilousi] 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.”

— Jana Bommersbach

Blood 2

Apr. 24th, 2010 10:10 am
purejuice: (Default)
[ profile] the_macnab is an intelligent and subtle person, and I am interested in his arguments on the practice of "good science" in the matter of the informed consent of the Havasupai Indians in yielding blood samples to an Arizona State geneticist.

Informed Consent and Release Forms: Inherently Unethical?

Informed consent is a tricky matter, and I come to it as a reporter. One always identifies one's self as a reporter, and gives an account of the kind of story you're doing which requires this person's participation. Sometimes this account is disingenuous, especially if the story is about something your subject doesn't want known. Since the account of the kind of story you're doing is the equivalent, to scientists and lawyers, to a release form, because you want the subject to consent to speak to you as the result of the account of what you're going to do with their information, there is a wide range of practice in these accounts. They pretty much have to stand up to scrutiny in a court of law. And they do. Many of these accounts are totally unethical but they are not illegal.

So I get it, and I get it good, about release forms. I would characterize them as the devil's half of a Faustian bargain. The last time a Cambodian I've been interviewing for nearly 20 years asked me for money, I told him it was unethical, that people who are paid for information have incentive to make it up. So it works both ways, and the only permissible moral transaction is altruism, that the free participation of the subject will help himself or others, and that the unearned acceptance of this trust by the reporter or scientist is that the information will be used to help the subject and other people. Anything else is a rip off, and by the reporter or the scientist, who is the agent in the initiation of this Faustian transaction.

And I would submit that reporters' depradations in this department are much more transparent than those of "scientists". The result of reporters' pillage is immediately reviewed by several levels of editors, and, in any newspaper of substance, by lawyers, and is then reviewed immediately -- within a day or days -- by half a million readers, about 20 of whom have the money and political will to pick serious and litigable bones. In other words, there is peer review after peer review for the reporters' ethical, or unethical, release form, as well as the widest, most timely, and most transparent public and legal scrutiny, as well as accountability mechanisms. Reporters don't have impunity -- one's victims, if one is doing one's job, are rich -- the way scientists -- whose victims notoriously have no affect -- do.

The Havasupai DNA Case

Therese Markow is the geneticist -- her doctorate is in the zoology of flies -- who took blood samples from the Havasupai. The small tribe of Indians had been decimated by diabetes, and asked another professor for help. He enlisted the geneticist whose testing the Havasupai DNA for a diabetes gene was the account given to the Havasupai. The NYT story is not clear on just how general the release form signed by the Havasupai was, nor if they actually signed it, nor how well they understood a document written in English, nor how many of them actually can read. Their blood was taken by Markow, the geneticist, as she promised medical assistance with the diabetes epidemic. Her taking of the blood was financed by a grant for schizophrenia DNA research; whether or not the Havasupai consented to this, or were aware of this, is unclear. Their blood was, apparently (also not quite clear) tested for a diabetes marker and none was found. For 20 years after, 151 Havasupai blood samples taken by Markow were tested for a variety of DNA markers, including schizophrenia. Whether or not the Havasupai consented to this testing, and the two dozen scholarly publications on it, and Markow's mentorship of PhD. students and their dissertations based on further, probably unauthorized testing, is the question. A Havasupai woman was passing by the first professor's office 13 years after the taking of the blood samples, and was invited to the PHD dissertation presentation of one of Markow's proteges. He had worked with the blood samples and based at least one chapter of his PhD. thesis -- 13 years after the consents were signed, if they were in fact signed -- on what genetic information he found in the Havasupai blood samples. The woman, Carletta Tilousi, attended the presentation, and during the question period asked the student if he had had permission to use the Havasupai blood. The presentation was halted. Markow and the PhD committee subsequently asked the student to redact the chapter of his thesis based on his work with the Havasupai blood, and apparently his PhD. was granted on the basis of the redacted version of the dissertation.

Despite a judgment against her and her institution, the geneticist Markow was still arguing Thursday that she was practicing "good science". Obviously she has no choice but to do so; on the other hand, she could shut up.

[ profile] the_macnab's Argument for the Practice of "Good Science" by Markow

It is possible -- and the intarnets are very very frustrating in this way -- that Teh MacNab is arguing a much more subtle and sophisticated case than the one I'm getting. But this is what I think is the gist of his argument (in protected entries).

MacNab first thought that the redaction of the PhD. chapter was an admission and a judgment of guilt by Markow and the PhD. committee on the student's not having permission to use the Havasupai blood.

He then thoughtfully came up with a scenario which is a good insight into academic practice. The PhD. dissertation hearing has a foregone conclusion, since the committee has approved every stage of the paper from its inception. It is not presented unless it is what the committee has agreed upon as the highest standards of scholarship. In other words, there could have been no admission by Markow, her colleagues, or her protege who had been studying the Havasupai blood samples she took, and kept in a freezer marked MARKOW, that anything but "good science" was being practiced.

When the Havasupai woman made her objection to the thesis, the redaction of the chapter is viewed by MacNab as, possibly, nothing more than a move designed to grant the student his PhD. and let him move on to his post-doc employment with dispatch, and without any onus.

The redaction of the chapter is no reflection on the student's work, nor indeed that of his mentor and committee members.

Second, MacNab argues that the practice of good science requires the writing of as broad a consent form as possible, as it required Markow to find secondary and tertiary uses for the blood samples after no diabetes DNA marker had been found. It is good science, MacNab says, to look at the "data" from every possible angle, to which end, the broadest consent form must be authored and sought.

My Problem with This

My problem with this is very, very simple. People asked for help with a diabetes epidemic which was crippling their people, young and old, and depopulating their last redoubt of 500 acres at the bottom of the Grand Canyon. People were leaving for dialysis. They were afraid they would lose their home, which the gods had given them guardianship over, as well as their community and heritage.

What they were asking for, whether or not they expressed it correctly, was medical help.

What they got -- because they are isolated, "racially" "pure", illiterate, non-English-speaking, few, poor, ill and helpless -- without affect -- was DNA testing.*

For schizophrenia.

By, arguably, racist and immoral opportunists.

This may be good science. But it is bad medicine. Bad medicine of the kind well-documented as the "scientific" justification for genocide.

NYT story on Havasupai DNA Scandal )

* Captive populations are always seen by dominant societies -- and by themselves -- as pools for conscripts, sex slaves, forced labor and medical experimentation. This is widely observed, well-documented, and completely under-studied in the literature on prisons, concentration camps and refugee camps. I am certain that it has been widely documented and under-studied in the literature of Indian reservations and aborigine institutions all over the New World, and the study of this exploitation as a genocidal practice.
There is a persuasive argument that people in prisons, camps and reservations are already seen as damaged goods, or victims of genocide. This itself attracts exploitation.


Apr. 22nd, 2010 11:23 am
purejuice: (Default)
I don't know if the Havasupai are Navajo people, and I don't know exactly what the Navajo construct is of blood. One of them is that water is the blood of the mythic universe. One of them is that blood is a war trophy the Monster Slayer took from the Burrowing Monster -- a colon filled with blood.

Bad blood, we understand. It's in our blood, we understand. Blood and treasure, we understand. Blood brothers. Spilling blood. Blood sacrifice. This is my body and my blood.

It is the sacred fluid of spiritual initiation, kinship, enmity, obligation and essence.

And why the bitchy geneticist from Arizona State felt she, and a generation of her bitchy students, were entitled to play with the blood samples of the Havasupai for 20 years after she had extracted it from them, publishing a score of scientific papers on their findings, without telling them that she was planning much more than the diabetes testing they had agreed to, can claim she is "doing good science" is hard to credit. In the passage italicized below, in 2003, a Havasupai woman interrupts the doctoral defense of one of these students, asking if he had permission to use the blood samples. The presentation was halted and the bitchy geneticist had the student redact that chapter from his PhD. thesis. In a word, she knew she was doing wrong long after the help she promised with the diabetes epidemic never materialized.

Therese Markow, who actually had the balls to wear turquoise for this photograph. In the Navajo creation myth, the sun was created from turquoise and it has many other sacred uses.

She was doing bad science, of the ilk which required the Smithsonian to return the bones of Indians to their descendents for respectful burial. She was doing bad science because you can just see her getting a boner for the blood of this isolated tribe of people and testing it for genetic disposition to schizophrenia -- the schizo grant paid for the blood sampling in the first place, and the story does not make clear that the Havasupai were informed of this -- Alzheimer's, Bering Strait origins and whatever other kinds of secrets. These secrets, spiritual and medicinal, the Havasupai as 21st century patients might feel are confidential medical information. Which, widely publicized, as they explicitly say, might be used to drive them from their land. I'm certain they also fear further stigmatization as genetically inferior. They might feel equally that the unauthorized plumbing of these secrets is, if not a betrayal of their trust equal to the dispossesion of their land, their deportation to 500 acres at the bottom of the Grand Canyon, a catastrophic violation of the fluid which is as sacred to them as it is to the rest of us.

This picture, in which Havasupai elders regard the frozen test tubes of the blood they donated, including the blood of people who have passed away, is the entire story. They are praying over the blood.

I wish the NYT story had given some indication of what the blood represents to the Havasupai, some context on the tradition of "science" to steal blood and bones from Indians -- and indigents like Henrietta Lacks, whose cancer cells live on in tissue taken from her body without her knowledge or consent, the eugenic Nazi tradition of medical experiments upon people of color and the Other, and looked into the academic culture which permitted Markow to advance herself literally on the blood stolen from the Havasupai.

She was doing bad science because the genetics of diabetes among the Indians is not well-established, because her grant was for schizophrenia genetics, and because diabetes among Natives may often be a case of nurture and not nature. She offered nutritional counselling and clinics and did not deliver. Bad faith, bad science.

But a few years later, a graduate student using new technology came up with a way to discern variations in the Havasupai DNA, which was stored in a university freezer, and he wrote a dissertation based on his research.

Carletta Tilousi, one of the few Havasupai to attend college, stopped by Professor Martin’s office one day in 2003, and he invited her to the student’s doctoral presentation.

Ms. Tilousi understood little of the technical aspect, but what she heard bore no resemblance to the diabetes research she had pictured when she had given her own blood sample years earlier.

“Did you have permission,” she asked during the question period, “to use Havasupai blood for your research?”

The presentation was halted. Dr. Markow and the other members of the doctoral committee asked the student to redact that chapter from his dissertation.

Havasupai Win DNA Case )


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