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After DNA Misuse, Researchers Banished From Havasupai Reservation 332

Posted by timothy
from the while-the-rivers-run-clear dept.
bbsguru writes "A court settlement has ended a controversial case of medical privacy abuse. From the NYTimes: 'Seven years ago, the Havasupai Indians, who live in the deepest part of 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 tribe had given DNA samples to university researchers starting in 1990, hoping they might provide genetic clues to the tribe's high rate of diabetes. But members learned their blood samples also had been used to study many other things, including mental illness and theories of the tribe's geographical origins that contradict their traditional stories.'"
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After DNA Misuse, Researchers Banished From Havasupai Reservation

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  • Re:Live from Arizona (Score:3, Interesting)

    by AshtangiMan (684031) on Thursday April 22, 2010 @03:28PM (#31944230)
    As for the first point regarding air-space, perhaps you should put yourself in their shoes for a minute. You are part of a sovereign nation, and some dudes come in over sea and take over, relegating you to a small patch of land. Eventually these conquerors (after killing most of your kind) grant you sovereign rights once again. It is up to Germany to determine what happens over German airspace, right? It is up to the FAA to determine what happens over USA airspace, still right? Now, the tribes have mineral rights over their lands, what is so absurd about them claiming the airspace above as well? Just because the FAA tells them? Who are the FAA to dictate rules to a sovereign entity? The arrogance is astounding. All people bend the laws to their own will, or at least anyone with the power to do so does. Sounds to me like you are a bit jaded with regards to the Havasupai . . .
  • Re:Damn them! (Score:1, Interesting)

    by Anonymous Coward on Thursday April 22, 2010 @03:35PM (#31944360)

    Their heritage is more important to their lives than our research. This is a lot like the Creationism vs. Darwinism debate, but with more genocide.

  • Re:Live from Arizona (Score:3, Interesting)

    by Anonymous Coward on Thursday April 22, 2010 @03:55PM (#31944736)

    Native tribes do not have full sovereignty. They are also not native, and they certainly didn't treat the people they displaced any nicer than the Europeans treated them.

    I think we should just eliminate reservations altogether. Give the land to these people as private property, make them normal citizens, and let them live their lives.

  • Re:Interesting... (Score:3, Interesting)

    by Bobb9000 (796960) on Thursday April 22, 2010 @03:59PM (#31944804)
    Everyone keeps saying that they violated the terms of the agreement, but from TFA, I'm not so sure that's the case. The agreement said that the blood would be used to “study the causes of behavioral/medical disorders”. Most of the research described seems to fall under that category. It was originally presented as work to help understand the high diabetes incidence in the tribe, because that was why the blood was collected in the first place, but when that work was done, they still had the DNA. Why not do research to the full extent covered under the agreement? It would have been more polite, perhaps, to for the various researchers working with the samples to keep the tribe updated on their work and findings, but nothing in the agreement required that.

    Regarding your insistence that this was a violation of "do no harm" - I'm not buying it. I understand it's place in medical lore, but if you think it's really a useful guide, you're wrong. If "do no harm" was truly a useful rule for guiding doctors' actions, then they could never perform surgery, they could never prescribe drugs with harmful side effects, and the entire structure of medicine as we know it would cease to exist. They have to do some harm; the question is whether the harm is outweighed by the benefits. "Do no harm" sounds nice, and as a sort of generalized medical philosophy it's salutary, but it's so vague as to be useless for actually making decisions. That why, when doctors are actually looking at the ethics of their decisions, they don't ask "Did I do harm?". They look to the rules of medical ethics which have been developed through a lot of hard work by people actually dealing with real-world problems. Much as with science generally, relying on the writings of people who have been dead for thousands of years rather than your own judgement and the evidence is a terrible idea.
  • by Quantum Jim (610382) <jfcst24NO@SPAMyahoo.com> on Thursday April 22, 2010 @04:01PM (#31944840) Homepage Journal

    So, were they mislead, or is this more of a type of "buyers remorse"? There are plenty of places where the local population is uneducated and unlikely to fully understand genetic testing, should we stop studying them, and in the process deny them the good (potential treatments for disease that they suffer from) to protect them from "the bad" (the possibility that their world-view will be challenged, or that the data will be applied to larger studies)?

    Also, one of the big issues here seems to be that the findings contradict their folklore: 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.” So science showed that their fable about springing from the ground in this canyon was, at best, unlikely. So what. We don't accept that the Earth is the center of the universe, that sex with virgins cures disease, that human sacrifice improves crop yield, or that it's turtles all the way down, why should we care about this story either. I'm not inclined to "turn off" science just because results show that a stone-age story is just a story.

    I agree with your second part. Challenging anyone's worldview is always a good thing. Whether they are Christians, Havasupai, or even athiests, challenging people with evidence contradicting their ignorance is a good thing! It keeps society from stagnating by encouraging free thinking!

  • Re:Damn them! (Score:3, Interesting)

    by mea37 (1201159) on Thursday April 22, 2010 @04:05PM (#31944890)

    If the studies had really revolved around matters related to the tribe's diabetes problem, then I imagine the university would've raised that argument.

    TFA does kinda-sorta imply that the type of study you're talking about is possible in the realm of genetic research, which is all well and good; but nowhere do I see any indication that it's what actually happened. In fact, I'd like to know how they'd go about that since they didn't find a genetic link to the diabetes problem in the first place.

    If you want to argue that reserachers shouldn't need specific concent to broaden the uses to which DNA is put once collected, then make that argument. It is a legitimately debatable point, though in this instance I believe the cross-cultural issues will tip the balance toward requiring concent. But come on - don't hide behind counter-factual interpretations of what happened; it just makes our culture look that much less worthy of trust.

  • by spamking (967666) on Thursday April 22, 2010 @04:07PM (#31944934)
    I actually worked on the Navajo for 5 years. I totally understand where you're coming from. I was in several similar meetings. The Navajo Nation Institutional Review Board has it's work cut out for it . . .
  • Re:Damn them! (Score:3, Interesting)

    by Jah-Wren Ryel (80510) on Thursday April 22, 2010 @04:24PM (#31945172)

    The line can only be drawn at "no expectation of DNA privacy for anyone". Each of us sheds millions of skin cells every day, everywhere we go, leaving our DNA samples on everything we touch. Anyone who considers their DNA their property should kindly not litter and keep it to themselves.

    I'll be right there with you, just as soon as the laws preventing me from doing whatever I damn well please with the electromagnetic signals broadcast onto my property are repealed.

  • Re:Damn them! (Score:3, Interesting)

    by Christoph (17845) <chris@cgstock.com> on Thursday April 22, 2010 @04:41PM (#31945456) Homepage Journal

    I, for one, do not care about my DNA being private. But, as you wrote, I might care about an abuse (telling me I can't live in my neighborhood because my DNA says my ancestors once lived in a certain part of the world, etc).

    The most abused information -- age, race, gender -- is public. We can't keep it private (in a one-on-one personal encounter) if we wanted. The only solution is to reduce unfair treatment based on that information. Why is that not the same with DNA or other personal information (that has public health and scientific uses)?

    My DNA can be used to find cures to disease, and I would provide it. I don't want to micro-manage how my DNA benefits science or is arguably mis-used. Unless you grow my DNA into a bullet and shoot it at me, it's not important to me.

    Public health is important. Finding a cure for Parkinson's, alzhiemers, diabetes, autism...I really, really, really, really care about those things. If some moron arguably misuses my DNA to learn what-not I just am not interested.

  • Re:Get it Back (Score:3, Interesting)

    by ffreeloader (1105115) on Thursday April 22, 2010 @05:46PM (#31946310) Journal

    do you mean force it to be deleted on the grounds that the data was obtained unethically? Because that would actually be an even creepier precedent.

    The research should absolutely be deleted as it was done on subjects without their consent or knowledge. The precedent set by using that research would be the total violation of privacy, as it says its alright for government institutions to use deceit to get personal information.

    That you see a problem with stopping this type of action on the part of the government says a lot about you. It says you think the government has the right to deceive you and abuse the agreements it makes with you.

    I say you haven't given this subject any thought at all. If you have, then it says a lot about how you value your, and more importantly your neighbor's right to privacy. To me it's really scary that you would want to steal my privacy.

  • by nbauman (624611) on Thursday April 22, 2010 @06:22PM (#31946852) Homepage Journal

    The NYT story was pretty good, but Nature had an even better story (from the scientists' perspective). For the subscription-challenged among you:

    http://blogs.nature.com/news/thegreatbeyond/2010/04/native_american_research_lawsu_1.html [nature.com]

    Native American Research Lawsuit Settled - April 22, 2010

    Posted for Rex Dalton. ...

    The researchers denied the charges then, and still do. Mick Rusing, a Tucson attorney representing the one remaining researcher defendant, notes that all those charges were rejected by judges as the case moved through state and federal courts. The remaining claim in state court related to alleged negligence. ...

    The tribal government will receive no money, state attorneys say. The award will cover legal expenses [emphasis added] for the 41 tribal members who remain as plaintiffs, with those members dividing the amount left after the legal costs, their attorney says. The exact details of those distributions are private, say Stephen Hanlon, a Washington, DC attorney for tribal members; he adds he isn’t being paid. ...

    Geneticist Therese Markow – the former ASU leader of the project and the remaining researcher defendant – told Nature: “I’m glad it’s over; but it never should have happened. There was no basis for any claim. They would have lost had it gone to trial.”

    When the project began, the ASU Humans Subjects Committee approved genetic studies of diabetes, schizophrenia and depression. Markow, who is now at the University of California at San Diego, says the research was conducted properly, tribal leaders were briefed on the studies, and patients were treated with respect. ...

    Markow’s attorney, Rusing, said at least a half dozen of the original suing tribal members were shown not to have been in the study. Markow added that plaintiff Tilousi “wasn’t in the canyon” during the study. ...

    “Tribal members were mislead by various parties,” says Markow. “This created suspicious sentiments; made them feel vulnerable. That was a shame; a travesty.”

    In the end, she says, these misconceptions spread through various Native American communities making them more suspicious of researchers.

    “It is a bitter irony that a group of people who historically have been under-served with respect to health-related research may now become even more under-served,” says Markow.

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