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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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  • Damn them! (Score:2, Insightful)

    by maugle (1369813)
    Those damn researchers, trying to study other diseases and discover our true heritage! How dare they?!
    • Re: (Score:3, Insightful)

      by Anonymous Coward

      Well, even if their intentions were good, the samples were provided for a different purpose.

    • Re: (Score:2, Insightful)

      by spamking (967666)
      Exactly. They just opened the flood gates for the rest of US Tribes . . . expect more complaints to be filed.
      • by pavon (30274) on Thursday April 22, 2010 @02:09PM (#31943948)

        There was already fallout from cases like this when it was first discovered in the mid-nineties. I grew up more or less on the Navajo reservation, and remember sitting in on a PTO meeting as a high school student. There was a doctor there who was explaining the diabetes screening that was going to be taking place in the coming months.

        She was a Navajo gal who had returned to the res after getting her degree (despite the fact that she could have got a much better job elsewhere), and had managed to secure a government grant to perform free diabetes screening of every native student in the district. I thought this was a great thing given the high rate of diabetes on the res, the low health care coverage, and the importance of detecting diabetes early.

        However, one of the school board members, who also held a tribal government post, kept railing on her and accusing her of all kinds of crap, including asking why she hadn't gotten permission from her as a tribal officer first (in fact the doctor had, and even had papers signed by the board member with her). At first I thought it was just because she was a territorial bitch (she was). However, after later hearing about this case, I understood why she was so sensitive to this particular issue, and agreed that her concerns (although not her behavior) were absolutely justified.

    • Re:Damn them! (Score:4, Insightful)

      by Kelbin (1787356) on Thursday April 22, 2010 @01:42PM (#31943460)
      Really? The Researchers were given the DNA for the sole purpose of researching the Tribes troubles with Diabetes and then they started doing other things with that DNA that goes outside of what the samples were given for.
      • Re:Damn them! (Score:4, Insightful)

        by MillionthMonkey (240664) on Thursday April 22, 2010 @02:06PM (#31943918)
        Like figuring out whether the diabetes is comorbid with other mental illnesses that might be treatable? Or related to health problems seen among other groups too that may be dealing with them more or maybe less successively than people in the Tribes?
        • Re:Damn them! (Score:4, Insightful)

          by RightSaidFred99 (874576) on Thursday April 22, 2010 @03:02PM (#31944858)
          No, not like that at all. Nice story, though.
        • Re: (Score:3, Interesting)

          by mea37 (1201159)

          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 t

      • Re:Damn them! (Score:5, Informative)

        by NiteShaed (315799) on Thursday April 22, 2010 @02:15PM (#31944020)

        That would be true, but TFA says:
        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.”

        Yes, Diabetes was their primary motivation, but they signed on for more than that. The problem seems to be that they didn't like what happened later and regretted that decision.

        • Re:Damn them! (Score:4, Insightful)

          by mea37 (1201159) on Thursday April 22, 2010 @02:52PM (#31944684)

          Or alternately

          "The problem seems to be that they didn't like what happened later and realized that they hadn't understood what they signed."

          Even among native English-speakers, it is not unheard of for a signature to be considered invalid if it's later determined that the signer didn't really know what he/she was signing. This isn't something you'd want to rely on - it's obviously best to know what you're signing before you sign it. But this sounds like it was far removed from the ideal scenario for truly informed consent.

          We don't know how the document was explained to the individuals, because we weren't there. No malice would've been necessary for there to be a miscommunication about what was happening; I'd be thoroughly surprised if it had been fully explained and understood.

          Given that we don't know exactly what was said, based on the way each side has framed its argument it sure sounds like the Native Americans only intended one use for their blood, the issue was never explicitely discussed, the researchers didn't understand the donors' expectations or the sensitivity to the matter in their culture, and then you get what we have here. If that's true, then the real fault is a serious lapse of judgement on the researchers' part.

          Everyone involved may have acted with good faith and good intentions, but if you want to work with other cultures, and trumpet how well you work with other cultures, then you need to be aware of their point of view.

        • Re:Damn them! (Score:4, Informative)

          by b4dc0d3r (1268512) on Thursday April 22, 2010 @02:54PM (#31944730)

          If you read a bit further: 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.

          I realize that "[t]he consent form was purposely simple, Dr. Markow said, given that English was a second language for many Havasupai," but when you explain it as diabetes research and the consent form says something different, there's a problem. After the above question, the following happened.

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

          Bottom line is, if they were told it was one purpose, and the contract said something else, then you would have to prove that everyone who signed was capable of understanding that the contract did not match the verbal description. the sentence right before what you quoted was "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." Does that sound like someone who thought the consent form was more broad than just diabetes?

          "Doesn't matter, you signed a contract" is not bulletproof.

        • Re:Damn them! (Score:4, Informative)

          by TubeSteak (669689) on Thursday April 22, 2010 @03:14PM (#31945044) Journal

          Yes, Diabetes was their primary motivation, but they signed on for more than that. The problem seems to be that they didn't like what happened later and regretted that decision.

          http://en.wikipedia.org/wiki/Informed_consent [wikipedia.org]

          Especially when it comes to medical ethics, the wording of the contract is far less less relevant than the meeting of the minds [wikipedia.org] that precedes it.

          As context, if you look at how our laws are interpreted, the Supreme Court spends a lot of time delving into the intent of Congress, not just the final product.

        • Re:Damn them! (Score:5, Insightful)

          by nbauman (624611) on Thursday April 22, 2010 @03:38PM (#31945412) Homepage Journal

          The investigators treated the Havasupai the same way they treat their own families when they look for a genetic disease.

          The Times had another story about a doctor, James Lupski, whose family had the colorfully-named Charcot-Marie-Tooth disease, who got researchers to do DNA studies of his family. http://www.nytimes.com/2010/03/11/health/research/11gene.html [nytimes.com] In sequencing their DNA, they found that there were related conditions in other members of their family who everybody thought were healthy. They got a lot of useful information for that family.

          The investigators explained what they were doing to the Havasupai, as best as they could to subjects who don't speak English that well and who don't understand the science of it that well. This is a common situation with well-established rules. As the TFA explains, they got informed consent to do exactly what they did. This was for the benefit of the Havasupai.

          The alternative is to never do studies on poorly-educated people. Is that what you want?

          There is no such thing as "just studying diabetes." In DNA studies, they try to get all the useful information they can (or can afford), as they did with Lupski. That way they can look for patterns.

          Now a few members of the Havasupai want to complain about it (for their own benefit), so they've convinced the other tribal members that there is something wrong with doing standard medical studies on people with a poorly-understood disease. The subjects agreed, and now they're going back on their word. They got away with it because they were in a position to blackmail the university by getting other tribes to boycott their studies.

          If you want to say that the doctors also benefitted professionally and got grants for helping their patients deal with life-threatening diseases and potentially saving a few lives, yeah, OK, they did. What's wrong with that? And what about the lawyer who sued the university?

        • 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

    • Re: (Score:3, Insightful)

      by eldavojohn (898314) *

      Those damn researchers, trying to study other diseases and discover our true heritage! How dare they?!

      So where do you draw the line? And what kind of signal does this send to other people who are unsure of what their DNA samples will be used for? Regardless of good intentions or the betterment of science, that's a sure fire what to screw up any trust a community might have with you and anyone looking to use DNA analysis.

      • Re: (Score:3, Insightful)

        by melikamp (631205)

        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. What we should fight is the discrimination based on DNA analysis, because the genotype only describes some initial conditions, whereas the phenotype is what we are, and in many respects, what we've made of ourselves through

        • Re: (Score:3, Interesting)

          by Jah-Wren Ryel (80510)

          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: (Score:3, Interesting)

          by Christoph (17845)

          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

          • Re: (Score:3, Insightful)

            by melikamp (631205)
            I agree completely. I like your analogy with skin color: DNA is just as clearly exposed in the world, arguably even more so, but people get fooled into thinking that it is supposed to be private only because they cannot see it with a naked eye.
    • Re: (Score:3, Insightful)

      by Anonymous Coward

      Wow, you sure do have a great attitude towards individual rights. how 'bout I take your DNA and:

      Put it into a database along with your medical history
      Use it to study alcoholism or drug use
      Use it to study homosexual development
      Use it to study the development of our ancient ancestors from lower life forms
      Put it into a national/international crime database and run it against all unsolved cases

      You may not have a problem with any of these uses, but odds on if I do enough things with your DNA you will object to

      • by mrdoogee (1179081)

        I would only object to the 5th use of my DNA, as it violates the 4th Amendment. The rest, have at it.

        The basic tenets of your argument are sound however. I realize that while I may be quite free with my limits on DNA use, others may not. The question remains that did these people give informed consent to just diabetes or as a earlier poster claims to a broader collection of genetic disorders. Based on not RTFA, I can only speculate.

      • Re: (Score:3, Insightful)

        by pclminion (145572)
        Go for it. Just don't associate it with my name. How fucking hard is that?
    • Re: (Score:3, Insightful)

      It's a tricky situation. I'd love to agree with you in that gaining knowledge is extremely important. But ethically they should have at least asked for permission first. The problem now is that other tribes may be more reluctant to give samples for any reason lest they be abused.
    • by rotide (1015173)

      If someone told you they were taking a sample from you for reason X, would you not be angry if they then used it for reasons Y and Z?

      If it is "beneficial" (subjective) to you, maybe you would enjoy the "free" service of them utilizing your sample for reasons Y and Z, but if it was merely beneficial to the company that harvested the sample and you were to get no benefit from it?

      I might enjoy learning that I have a pre-disposition to a disease and should avoid smoking/drinking/pooping in non-neon shades of to

    • Re: (Score:3, Insightful)

      by mcgrew (92797) *

      You're not only missing the point, you're avoiding it entirely. Do you think researchers have the right to do research on YOU without your permission?

      • They didn't do research on them, they did research on their DNA, which the Havasupais provided willingly. Why is it all right for an individual to put usage terms on something they give away but not all right for a company to do it with a product they sell?
        • by rotide (1015173)

          So if one day cloning becomes legal and they decide to use a leftover sample of a lab test you had done years ago, you wouldn't get upset that a company now sells copies of you for whatever reason they want? I mean, you did give those samples away in the first place. What does it matter what they do with it after that?

          Or, lets get a bit more grounded. Say your blood sample that you had done years ago was now tested and it's proven that you and your family are predisposed to a whole host of diseases. N

          • I am not arguing anything any way. I'm asking, why is it all right for a person to set terms for DNA they've given away, but not all right for a company to set terms for a product it sells?
            • The terms in the DNA case were set by the scope of the study which was presented by the researchers and was the foundation of the agreement. Likewise, when you buy the product you know what the limitations are. Neither is a problem. When the company changes the limitations on the product (PS3, made more restrictive for instance) or the scope is expanded after the fact, without obtaining authorization then both are a problem. You see?
      • Re:Damn them! (Score:4, Insightful)

        by HeckRuler (1369601) on Thursday April 22, 2010 @02:59PM (#31944812)
        Except, as others have pointed out and you would know if you had RTFA, they DID have permission. The Havasupai went to the researchers to cure their diabetes, but in that process they were told, and agreed to, being researched for other disorders.

        Now, I can see, in a way, being miffed that research was done that didn't have any hopes of helping the people. (other then giving them knowledge about themselves). And they could ever so slightly argue for some kick-back from that research, but that's a little greedy.

        But other then uncovering some inconvenient truths, I'm not seeing the problem. Suck it up and deal with reality. I'm siding with the researchers on this one.
    • Re: (Score:3, Insightful)

      by thruthenight (1765910)
      What about this: you give your credit card number to a store for certain purchase, and they purchase dozen of other things on the same credit card for you ("Yes, sir, we truly believe you need all those things, it's all for your own good!")
      • by ArsonSmith (13997)

        No, this is more like buying an iPhone and putting Android on it then seeing Steve Jobs get his panies in a bunch over it because you weren't suppose to do that with his idealistic view of the iPhone experience.

        They gave away their dna with/or without implicate consent to do something, but the sample no longer belonged to them. All the other analogies I've seen have been, I'm going to ask you for something then continue to affect you by doing other things (additional charges on your credit card, additional

    • i'm going to say i'm going to use it for one thing then secretly use it for another purpose without telling you

      and then i'm going to publish your dna and draw conclusions from it which aren't necessarily flattering

      also, when i publish this detailed info about your dna without your permission and without telling you, i'm going to do it in such a way that it is easy to figure out that it is your dna i am using

      do you object to any of that?

      • Did I give you the DNA voluntarily without any written terms to limit its use? Then I guess I'm not going to object, because that would only highlight what an irresponsible idiot I am, and how I'm willing to shift that blame for how irresponsible I am on to other people.
        • we're not talking cell phone company contracts here, we're talking common decency

          if you won't be decent to your fellow man in your relations with them, and instead use the logic that comcast uses when they gouge your bill, then you will reap ill will and you won't be doing any research again

          comcast and verizon get away with their gouging because they are abusing an imbalnace of power. you don't benefit from the weasel room you cite above when the footing is between equal entitities

          i fear for whomever consid

    • Re: (Score:3, Informative)

      by Kjella (173770)

      Collecting data for purposes A, then later using them without permission for B, C and D should be illegal. I know that is at least the case here in Norway, the law on use of personal information is quite strict. Consider it a form of fraud if you will, that's the issue here not the research itself.

    • The tribe members gave blood samples on the condition that they be used for a specific purpose. As interesting as these secondary investigations would have been, their blood belongs to them no one else.

    • Re: (Score:3, Insightful)

      by LWATCDR (28044)

      Dang right now dare a Native American tribe be upset when researchers don't honor the agreements they made with the tribe! They should trust that is is for their own good and will help them in the end.
      Oh and they should just give up their beliefs and and got on with life.
      Really have they learned nothing from history!

      Actually I have to find it a little amusing that they where upset to find out the researchers didn't keep there agreement. I mean really does any tribe really expect that any agreement they sign

  • you have committed the graver transgression, no matter how silly or zany someone's else's beliefs

    it wounld't have hurt the researchers to simply ask the native americans permission, simply as a matter of obvious and simple due course that a kindergartener would understand the rationale for

    the native americans might even have given their permission beforehand (no matter what they base their objections on after-the-fact), simply because you asked nicely

    when you don't grant people simple social common decency, their positions harden and they get angry at you

    a little niceness goes a long way in this world, and its a shame not enough people understand that

  • There seems to be a shortage of actual details on the settlement. Bueller? Bueller?
    • by jDeepbeep (913892)
      Never mind. This was in the NYT blurb.

      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

      Did not follow that link due to the implied past tense (seven years ago) of the sentence lead-up to it.

  • by gront (594175)
    The IP rights and ownership of biological materials has been an important intellectual property issue for quite a while. Who owns or should commercially benefit from cell lines and tissue samples has been litigated several times.

    Quick google search turned up http://www.dddmag.com/intellectual-property-and-biological-materials.aspx [dddmag.com] which is a summary of some of the important cases.

    http://en.wikipedia.org/wiki/Moore_v._Regents [wikipedia.org] is one of the "big" cases, and worth reading the wikipedia summary of, " The Ca

    • by Intron (870560)
      What's really troubling about Moore v. Regents is the undisclosed conflict of interest. It was in the physicians' interests to remove his spleen and draw samples because they kept and profited from the cells. If Moore had gone to a different doctor who was just providing him with treatment and not doing research would he have received the same care?
  • Interesting... (Score:3, Insightful)

    by fuzzyfuzzyfungus (1223518) on Thursday April 22, 2010 @01:47PM (#31943574) Journal
    I'm torn here. On the one hand, I would not want research on tissue samples being done outside of the scope of the informed consent permissions document under which the samples were collected. If that did, indeed, occur, the researchers lied to their test subjects. That is all kinds of unethical.

    On the other hand, every time I here a "waaah, cry cry, science is being mean to my bullshit creation myths, mommy make it stop!" my blood starts to boil and I get serious about implementing a method of punching people in the face over the internet.

    Yeah, of course we'll be able to do genetic research into your nasty-and-probably-heritable-disease without comparing your DNA to that of other populations, probably in ways that cast doubt on your bullshit story of having been plopped down by the gods, ready made, in the Grand Canyon... No problem at all. Also, we'll definitely not have to mention that inbreeding might have occurred, after we see those stacks of homozygous alleles. Oh, of course inbreeding would never occur in your precious (and very genetically isolated) little culture, and it hurts your feelings when we mention that the genetic evidence says that it did. Cry, cry.

    Listen, fuckers, science isn't some magically wish fulfillment machine "Why yes Dr. Scientist, please use your science magic to cure my diabetes...", it's just the best method we have for learning about the world. If you don't want to know, GTFO. If you want science to solve your little problems, be prepared to learn about how the world actually is.

    If the researchers went beyond the scope of their subject's informed consent, fuck them.

    However, if our picturesque little tribe signed up for the research, but is just getting all touchy because they don't like the results, then fuck them. Maybe next time they can ask the mythical entities that plunked them down in the Canyon to solve their medical problems for them, if the idea of having crossed the Bering Strait is just too culturally insensitive for them...
    • by dcollins (135727)

      "On the other hand, every time I here a 'waaah, cry cry, science is being mean to my bullshit creation myths, mommy make it stop!'..."

      So shall it ever be.

    • Re: (Score:3, Insightful)

      However, if our picturesque little tribe signed up for the research, but is just getting all touchy because they don't like the results, then fuck them.

      About that punching people over the internet device-- I'd start with your own face. It isn't about cultural sensitivity "getting in the way of" science, nor does it even have anything at all to do with the scientific method, nor are these people challenging it, nor did they expect a "magical wish fulfillment machine" to cure their illness. This was about a very specific rule in medicine, which is do no harm.

      Harm is not just physical, it can also be psychological. And in this case, by violating the terms lai

      • Re: (Score:3, Interesting)

        by Bobb9000 (796960)
        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.
    • Re:Interesting... (Score:5, Informative)

      by pz (113803) on Thursday April 22, 2010 @02:16PM (#31944058) Journal

      I'm torn here. On the one hand, I would not want research on tissue samples being done outside of the scope of the informed consent permissions document under which the samples were collected. If that did, indeed, occur, the researchers lied to their test subjects. That is all kinds of unethical.
       

      And it should have been blocked by the local Institute Review Board (IRB) who is supposed to oversee research involving samples of human tissue for this very reason (shades of Tuskege and vulnerable populations come immediately to mind). Either the researchers didn't get IRB approval, which is a career-ending mistake, or the IRB gave approval for what seems to be unethical use of the samples.

      Neither of those seem likely so I'm betting there's more to the story here.

      For those who are interested in understanding more about regulations concerning human research, the basis for current theory and practice is something called The Belmont Report (use Google). Also, for Federally Funded research, DHHS has specific guidelines (based on The Belmont Report recommendations): http://www.hhs.gov/ohrp/irb/irb_guidebook.htm [hhs.gov]

    • Re:Interesting... (Score:4, Insightful)

      by Herkum01 (592704) on Thursday April 22, 2010 @02:19PM (#31944096)

      Just because they are scientist does not mean they are angels out to do humanity good.

      Take the insurance company getting hold of your DNA. All of a sudden, the next time you go to use your benefits you find a whole list of exemptions. You have the markers for cancer X? Not Covered. Heart disease, epilepsy? Not covered. You get the idea.

      If you don't think that these things will happen you only have to read about Wellpoint [slashdot.org] to see if someone cancel your coverage to make a buck. Image what they would do if they had your DNA as well. They would drop you and you would never know what they found.

    • but the truth is, science does not operate in a vacuum

      you have to be sensitive to people's beliefs, no matter how self-serving, hypocritical, or absurd, not because their beliefs are valid, but because otherwise the peasants rise up and burn down your lab

      for all of the creationists, all if the jenny mccarthies, all of the anti-global warming corporate apologists: there is a grain not of truth in their resistance, but of atavistic reactionary distrust: "i don't understand this science stuff, and i am afraid. is it good for me? is it bad for me?"

      and then, if you talk to the people, if you remain sensitive to what they want and fear, and you give them feedback and assuage their concerns, their fears subside and they grow appreciative and cooperative

      but if you rain down insults and abuse and derision from your ivory tower like you do in your comment above, you will find their distrust deepens, their fear grows. and what you get is that seed of atavistic reactionary anger grows into a lynch mob: "see: the wizard in that castle is doing evil things, burn him at the stake!" and then you aren't doing science anymore, you're dead... you're research grant is defunded

      so you should be sensitive to what the common man thinks and believes. ridicule him at your own folly. when he tells you his concerns, do not belittle him, patiently console him and explain to him

      because if you don't you will find that your ivory tower is being tipped over by peasants with pitchforks

      all you really demonstrate in your comment above is a profound lack of social intelligence and an intense insulation from the real world. work on your humility. a little grace and decency to your fellow human beings, no matter in how little regard you hold their thoughts, is all you need. but instead, to engage in the hostility you do, simply means you are arrogant and full of blind pride, hubris

      you're setting yourself up for a fall mr. ivory tower

  • beautiful place (Score:3, Informative)

    by stoolpigeon (454276) * <bittercode@gmail> on Thursday April 22, 2010 @01:47PM (#31943576) Homepage Journal

    I've camped down there a few times. It's a great hike in and out and just a beautiful place to spend some time. Reserve your spots early, the space is limited.

  • You gotta be careful about the folks that you give your essence to, Mandrake.

    You really can't trust them folks who say they need your blood to do some research, or something.

    Won't those Havasupai Indians be surprised when their DNA winds up in Bratislava in a murder trial.

    Suspect: "Hey, but I've never been out of Arizona . . . and I don't even know where Bratislava is!"

    Prosecutor: "DNA evidence doesn't lie!"

  • I wonder what is to prevent DNA studies of large, existing "captive" databases. There could be a imperative moral reason, like a new bioweapon aimed at soldiers with the military looking at prevention. But that would be different use form what these samples were obtain for.

    Supposedly police DNA is just distilled to the 30-some markers used for an ID match. And the military is discarded after the soldier is discharged. But I doubt bureaucrats always carry these out.
  • by NiteShaed (315799) on Thursday April 22, 2010 @02:01PM (#31943836)

    From the looks of the article, it seems more like a case where the people were told but didn't understand the ramifications of their decision:
    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.
    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.

    • Re: (Score:3, Insightful)

      by The MAZZTer (911996)
      Uh I'm sure we knew about the Bering Sea crossing even before this specific DNA testing. So this is like pretending that it's the first you've heard someone say something negative about you and demanding an apology, when 70 or so other unrelated people have as well and so you should be used to it by now?
  • Live from Arizona (Score:5, Informative)

    by arizwebfoot (1228544) on Thursday April 22, 2010 @02:02PM (#31943858)

    I live not too far from the Havasupai reservation and I have to tell you that these Indians are not playing with a full deck.

    For example, they try to license the air space over the reservation, regardless of the fact that the FAA has told them many times that only the FAA may do that.

    They (the Havasupai's) bend the laws to their own will and then when someone tries to go after them, they hide on their reservation where you can't serve them with any notices and even if you did, they would ignore them.

    • Re: (Score:3, Informative)

      by arizwebfoot (1228544)

      Oh and the Havasupai don't live in "the deepest part of the Grand Canyon" that would be the Supai Tribe. The Havasupai live on top and is where they charge $75 for the sky walk over the GC.

      • Re: (Score:3, Informative)

        by WastedMeat (1103369)
        You are very misinformed. I have been to the Havasupai reservation recently. The Hualapai have the sky walk and the Havasupai do indeed live 8 miles below the rim of the Grand Canyon. "Supai" is the name of their village.

        It is probably unrelated but worth knowing, that in a village of 450 people that is 8 miles from the nearest road, they have a very nice modern diabetes clinic and exercise center.

    • Re: (Score:3, Interesting)

      by AshtangiMan (684031)
      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 min
      • Re: (Score:3, Interesting)

        by Anonymous Coward

        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.

  • by kwiqsilver (585008) on Thursday April 22, 2010 @02:23PM (#31944158)

    I've been to Havasupai (which is actually in Havasu Canyon, not the Grand Canyon, but they are connected). It's known locally for it's really beautiful falls (Moody, Havasu, and Beaver). If you remember the Indian village from Next [imdb.com], that's the place.

    While I was waiting to get helicoptered out (you can hike ten miles, or fly, there are no roads) after my girlfriend twisted her ankle, I got to watch for three hours as the locals flew in from their shopping trips. I do not remember a single one who was not obese. Most were morbidly obese. And the crap they were getting off the helicopter was, well, crap. They subsist on a diet of Hot Pockets [youtube.com], Cheetos, and Pepsi. They don't farm, they don't work, they do all have satellite TV, though.

    Morbid obesity, a high-fructose corn syrup heavy diet, and a sedentary lifestyle are all factors for an increased rate of diabetes.

    The other reservations in AZ that I've visited are primarily agrarian (with a few casinos), so for the most part, they're eating healthier foods, and they're out there performing physical labor to cultivate the food. A good diet, and plenty of exercise reduce the risk of diabetes.

  • Needless Drama (Score:5, Insightful)

    by BJ_Covert_Action (1499847) on Thursday April 22, 2010 @02:29PM (#31944258) Homepage Journal
    Meh, it all seems like another case of irrational, needless drama. Should the researchers have asked permission to use the DNA samples for other research? Probably. At the very least that would have been respectful. Nonetheless, who gives a crap if they didn't? So what, some scientists took your DNA, ran some tests, did some comparisons, and found out that, shock and awe, you are descended from other human beings just like the rest of us. Furthermore, they took a few extra steps and did some research on mental illness which may or may not have provided some beneficial medical data somehow. What's the big deal?

    I mean, sure, if the DNA samples were used to catalog and track the individual members of the tribe, associate them with their facebook pages, and then all that data was sold to the government or some ad agencies or something then yeah, that would suck. If your DNA was used to genetically modify some two headed cat that went on a rampage and ate babies, then yeah, that would suck. But what is the big deal with using it for more research?

    Like I said, the researchers definitely should have asked permission, but banning them from the tribe seems like overkill. At worst, this situations seems like it calls for getting miffed and then shrugging it off.
  • by Biggseye (1520195) on Thursday April 22, 2010 @02:43PM (#31944492)
    I a bit of background. My dear lady has Leukemia. A particularly nasty type. She has undergone Treatment and came through in great shape, so well that after 2 years there is no sign of it coming back. Remission is a good thing. Now I do not know if you are aware of this, but most research work on this nasty problem occurs at only a handful of major research centers. They also do the vast majority of the final diagnostic work. Anyway, Several weeks ago she had to go into the office and have a blood draw for CBC and the like. At the time the Doctor asked if she was willing to allow the Mayo Clinic have some blood for testing to see if there is a genetic reason she did so well and other do poorly. She agreed. To make a short story even shorter there was a document that needed to be signed that stated exactly what test were to be done and that any additional testing would require authorization in writing. I asked why all the paperwork. The Dr. response, " it is the right thing to do, morally and legally" So this is how it works. They have no right to do any tests other than those that were authorized and a violation would be a breaking of a legally binding contract. And remember, that is what it is, a legally binding contract.

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