Blood 2

[purejuice]

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.

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.




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April 21, 2010
Indian Tribe Wins Fight to Limit Research of Its DNA
By AMY HARMON
SUPAI, Ariz. — Seven years ago, the Havasupai Indians, who live amid the turquoise waterfalls and red cliffs miles deep in the Grand Canyon, issued a “banishment order” to keep Arizona State University employees from setting foot on their reservation — an ancient punishment for what they regarded as a genetic-era betrayal.

Members of the tiny, isolated tribe had given DNA samples to university researchers starting in 1990, in the hope that they might provide genetic clues to the tribe’s devastating rate of diabetes. But they learned that their blood samples had been used to study many other things, including mental illness and theories of the tribe’s geographical origins that contradict their traditional stories.

The geneticist responsible for the research has said that she had obtained permission for wider-ranging genetic studies.

Acknowledging a desire to “remedy the wrong that was done,” the university’s Board of Regents on Tuesday agreed to pay $700,000 to 41 of the tribe’s members, return the blood samples and provide other forms of assistance to the impoverished Havasupai — a settlement that legal experts said was significant because it implied that the rights of research subjects can be violated when they are not fully informed about how their DNA might be used.

The case raised the question of whether scientists had taken advantage of a vulnerable population, and it created an image problem for a university eager to cast itself as a center for American Indian studies.

But genetics experts and civil rights advocates say it may also fuel a growing debate over researchers’ responsibility to communicate the range of personal information that can be gleaned from DNA at a time when it is being collected on an ever-greater scale for research and routine medical care.

“I’m not against scientific research,” said Carletta Tilousi, 39, a member of the Havasupai tribal council. “I just want it to be done right. They used our blood for all these studies, people got degrees and grants, and they never asked our permission.”

Researchers and institutions that receive federal funds are required to receive “informed consent” from subjects, ensuring that they understand the risks and benefits before they participate. But such protections were designed primarily for research that carried physical risks, like experimental drug trials or surgery. When it comes to mining DNA, the rules — and the risks — are murkier.

Is it necessary, for instance, to ask someone who has donated DNA for research on heart disease if that DNA can be used for Alzheimer’s or addiction research?

Many scientists say no, arguing that the potential benefit from unencumbered biomedical research trumps the value of individual control.

“Everyone wants to be open and transparent,” said Dr. David Karp, an associate professor of internal medicine at the University of Texas Southwestern Medical Center in Dallas, who has studied informed consent for DNA research. “The question is, how far do you have to go? Do you have to create some massive database of people’s wishes for their DNA specimens?”

The Havasupai settlement appears to be the first payment to individuals who said their DNA was misused, several legal experts said, and came after the university spent $1.7 million fighting lawsuits by tribe members.

Even as the Havasupai prepared to reclaim the 151 remaining blood samples from a university freezer this week, Therese Markow, the geneticist, defended her actions as ethical. Those judging her otherwise, she suggested, failed to understand the fundamental nature of genetic research, where progress often occurs from studies that do not appear to bear directly on a particular disease.

“I was doing good science,” Dr. Markow, now a professor at the University of California, San Diego, said in a telephone interview.

Edmond Tilousi, 56, a cousin of Carletta Tilousi and the tribe’s vice chairman, can climb the eight miles from his village on the floor of the western Grand Canyon to the rim in three hours, when he is in a rush. Horse or helicopter are the other ways out, and Mr. Tilousi is increasingly rare among the tribe’s members in his ability to make the hike. Beginning in the 1960s, an extraordinarily high incidence of Type 2 diabetes led to amputations, even among the younger members, and forced many to leave the canyon for dialysis.

In late 1989, Mr. Tilousi’s uncle Rex Tilousi approached John Martin, an Arizona State University anthropologist who had gained the tribe’s trust, to ask if he knew a doctor who could help. “I asked him, ‘How can we prevent this from spreading?’ ” the elder Mr. Tilousi recalled.

Professor Martin approached Dr. Markow. A link had recently been reported between a genetic variant and the high rate of diabetes among Pima Indians. If a similar link was found among the Havasupai, it might point to an important risk factor.

The two professors received money from the university to study diabetes in the tribe. Dr. Markow was interested in schizophrenia research as well, and in the summer of 1990, with a grant from the National Alliance for Research on Schizophrenia and Depression, she and her graduate students began collecting blood samples in Supai. Women here remember being happy to see her in those days, an athletic figure who talked to them about how to be more healthy. Working out of the health clinic in the center of the village, Dr. Markow recruited tribe members to ask others to give blood. To the Havasuapi, blood has deep spiritual meaning.

“I went and told people, if they have their blood taken, it would help them,” said Floranda Uqualla, 46, whose parents and grandparents suffered from diabetes. “And we might get a cure so that our people won’t have to leave our canyon.” Roughly 100 tribe members who gave blood from 1990 to 1994 signed a broad consent that said the research was to “study the causes of behavioral/medical disorders.”

The consent form was purposely simple, Dr. Markow said, given that English was a second language for many Havasupai, and few of the tribe’s 650 members had graduated from high school. They were always given the opportunity to ask questions, she said, and students were also instructed to explain the project and get written and verbal consent from donors.

Dr. Markow examined several genes that were thought to have medical relevance, including for schizophrenia, metabolic disorders and alcoholism, she said, but found little to pursue. The Havasupai did not, it turned out, share the gene variant linked to diabetes in the Pima.

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.

But months later, tribe members learned more about the research when a university investigation discovered two dozen published articles based on the blood samples that Dr. Markow had collected. One reported a high degree of inbreeding, a measure that can correspond with a higher susceptibility to disease.

Ms. Tilousi found that offensive. “We say if you do that, a close relative of yours will die,” she said.

Another article, suggesting that the tribe’s ancestors had crossed the frozen Bering Sea to arrive in North America, flew in the face of the tribe’s traditional stories that it had originated in the canyon and was assigned to be its guardian.

Listening to the investigators, Ms. Tilousi felt a surge of anger, she recalled. But in Supai, the initial reaction was more of hurt. Though some Havasupai knew already that their ancestors most likely came from Asia, “when people tell us, ‘No, this is not where you are from,’ and your own blood says so — it is confusing to us,” Rex Tilousi said. “It hurts the elders who have been telling these stories to our grandchildren.”

Others questioned whether they could have unwittingly contributed to research that could threaten the tribe’s rights to its land. “Our coming from the canyon, that is the basis of our sovereign rights,” said Edmond Tilousi, the tribe’s vice chairman.

Many members are still suffering from diabetes and say they were never told if researchers had learned anything that could help them. The classes on nutrition that Dr. Markow had sponsored with grant money have since petered out.

Ms. Uqualla, who had recruited blood donors, said she felt shamed by the news that it had been used for research that could potentially damage the tribe. “I let my people down,” she said.

The money from the settlement will be divided among the 41 tribe members. Ms. Uqualla, for one, hopes to buy a horse trailer.

But Stephen F. Hanlon, a lawyer who has represented the tribe members without charge, said the resources the university agreed to provide, including scholarships and assistance in obtaining federal funds for projects like a new health clinic, had the potential to transform the tribal village at the bottom of one of the world’s most famous natural wonders.

On Tuesday, Ms. Tilousi cried as a university official unlocked the freezer in the nondescript storage room in the Tempe campus where the blood samples had long been stored. Wearing protective glasses, gloves and a lab coat, she and a delegation of tribal members sang in Havasupai as they saw the blood that had been taken from them and from their relatives, now dead.

On the box inside the freezer was scrawled the name, “Markow.”

This article has been revised to reflect the following correction:

Correction: April 22, 2010


A photo caption misstated the age of Edmond Tilousi as 48. Then it was changed to 55, which was also wrong. He is 56.

_______________________
* 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.