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After DNA Misuse, Researchers Banished From Havasupai Reservation 332

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 ) on Thursday April 22, 2010 @02:37PM (#31943356)
    Those damn researchers, trying to study other diseases and discover our true heritage! How dare they?!
  • 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

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

    by Anonymous Coward on Thursday April 22, 2010 @02:41PM (#31943432)

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

  • Re:Damn them! (Score:2, Insightful)

    by spamking ( 967666 ) on Thursday April 22, 2010 @02:41PM (#31943442)
    Exactly. They just opened the flood gates for the rest of US Tribes . . . expect more complaints to be filed.
  • Re:Damn them! (Score:4, Insightful)

    by Kelbin ( 1787356 ) on Thursday April 22, 2010 @02:42PM (#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:3, Insightful)

    by eldavojohn ( 898314 ) * <eldavojohn AT gmail DOT com> on Thursday April 22, 2010 @02:43PM (#31943470) Journal

    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:Damn them! (Score:3, Insightful)

    by Anonymous Coward on Thursday April 22, 2010 @02:43PM (#31943488)

    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 one of them.

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

    by Mordok-DestroyerOfWo ( 1000167 ) on Thursday April 22, 2010 @02:45PM (#31943520)
    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 gyrogeerloose ( 849181 ) on Thursday April 22, 2010 @02:46PM (#31943546) Journal

    >So, left-wing postmodern cultural relativists, where is your FSM now?

    When the Havasupai start lobbying to put their origin stories in my grandchildren's school textbooks in place of natural selection driving evolution, then I'll worry about it.

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

    by fuzzyfuzzyfungus ( 1223518 ) on Thursday April 22, 2010 @02:47PM (#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...
  • Re:Damn them! (Score:3, Insightful)

    by mcgrew ( 92797 ) * on Thursday April 22, 2010 @02:47PM (#31943578) Homepage Journal

    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?

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

    by thruthenight ( 1765910 ) on Thursday April 22, 2010 @02:49PM (#31943636)
    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!")
  • 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?

  • by Anonymous Coward on Thursday April 22, 2010 @02:52PM (#31943684)

    The DNA samples were given for an explicit purpose.
    They were not SOLD. The samples are not purchased property to do with as they wish.

    A PS3 on the other hand is purchased property and is it the end user's prerogative to with it what they will.

  • by circletimessquare ( 444983 ) <circletimessquare&gmail,com> on Thursday April 22, 2010 @02:55PM (#31943718) Homepage Journal

    with the understanding it would only be used in certain ways

    it's not like giving you my bike or my car. with physical objects: do whatever you want with them, who cares, the new owner is the 100% owner

    but these people are giving their genetic identity to someone else. that's not like the transfer of ownership of a physical object. it's not free and clear of any continuing considerations, because the continued use of their dna has implications and meaning about how they view themselves, how they live their lives, and the way others see them

    simple ethics means that whatever you do with these people's dna, you have to ask them first, forever

  • Re:Damn them! (Score:2, Insightful)

    by sconeu ( 64226 ) on Thursday April 22, 2010 @02:56PM (#31943750) Homepage Journal

    Let's imagine you own a gun. Joe comes to you and says, "I want to borrow your gun for target practice". He uses it for target practice, and then uses it to rob a bank.

    Hey, you can't be pissed off... he didn't say, "for target practice, and NOTHING ELSE".

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

    by MillionthMonkey ( 240664 ) on Thursday April 22, 2010 @03:06PM (#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:Get it Back (Score:3, Insightful)

    by keithjr ( 1091829 ) on Thursday April 22, 2010 @03:08PM (#31943942)
    Can they also get back the research that was done, now likely digitally archived? That's the more creepy precedent set by DNA misuse. Heck, why would the university want it after it's been sequenced?
  • Re:Interesting... (Score:3, Insightful)

    by girlintraining ( 1395911 ) on Thursday April 22, 2010 @03:13PM (#31943996)

    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 laid out by the informed consent agreement, they did cause psychological harm. It's not for you to decide whether it's justified or not. We know tons about medicine because of WWII experiments done on unwilling subjects, and no -- I don't just mean Germany. And it hasn't just been in wartime -- any time social inequity has existed, there has been a potential (often realized) to hurt a smaller group of people to benefit a larger in the name of progress. Many advances in medicine have been looked back on with shame -- because we hurt people to get the information we have. So we learned from our mistakes and now we are very specific in what we tell patients, howe we tell them, and the specifics of the doctor-patient relationship, and all of this branches from the ethical fundamental of do no harm. That's a line that any self-respecting scientist, doctor, engineer, or decent human being doesn't cross lightly, if ever.

    These researchers breached that foundation of trust. Doesn't matter why they did it. Doesn't matter what benefit there was. It's tarnished by the fact that they broke their own rules and harmed another culture doing so. That is indefensible. Let me be clear: This isn't about science or technology. This is about ethics and these people did something unethical because they thought the ends justified the means. And frankly, if science as an instutition is to survive, it needs to recognize that it is not an end unto itself, nor is it a religion, but simply and justly a tool in a box, to be picked up and used when society needs it, and put back in its box when it is no longer needed.

    The idea that progress for its own sake is justified has been the source of some of the darkest chapters of human history. Do not drag an institution that has strived to learn from its past mistakes back through the mud purely to justify your own cultural intolerance.

  • Re:LOL (Score:4, Insightful)

    by Wyatt Earp ( 1029 ) on Thursday April 22, 2010 @03:16PM (#31944044)

    Since I'm from the Northern Great Plains, American Indian and a Great Plains Indian Wars historian just wanted you to know that it wasn't a genocide.

    The Indian Wars were a low intensity conflict between small US Army units and small warrior bands.

    90% of the American Indian population on the Great Plains were not killed, in fact only 8-9,000 American Indians died in the Great Plains from 1850-1900.

    So the fact remains, the Federal Government is pushing a religion in BIA funded schools.

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

    by tophermeyer ( 1573841 ) on Thursday April 22, 2010 @03:16PM (#31944052)

    If they wanted to have expansive use definitions for samples that they voluntarily surrendered, they should have had those terms in writing.

    They don't need to make an explicit demand for that, that is something that is actually already assumed. One requirement for conducting research with all human subjects (and especially protected populations) is that they be made fully aware what their data is being used for prior to giving their consent (though some research models require deception and an eventual debriefing this was not the case here).

    If you complete your stated analysis on a given set of samples and later desire to do further analysis, then Human Subjects ethical requirements actually put the onus on the Researchers to go back to the Participants and get their explicit permission to continue using their samples.

    A major concept in Human Subjects testing is Informed Consent. Researchers are required to fully explain the nature of the study and receive full informed consent from Participants before they can collect any data. This kind of thing is something that HST Researchers (along with their professional organizations and regulatory bodies) take very very seriously.

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

    by Herkum01 ( 592704 ) on Thursday April 22, 2010 @03:19PM (#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.

  • by circletimessquare ( 444983 ) <circletimessquare&gmail,com> on Thursday April 22, 2010 @03:23PM (#31944154) Homepage Journal

    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

  • by kwiqsilver ( 585008 ) on Thursday April 22, 2010 @03:23PM (#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 @03:29PM (#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.
  • Re:Damn them! (Score:3, Insightful)

    by LWATCDR ( 28044 ) on Thursday April 22, 2010 @03:29PM (#31944260) Homepage Journal

    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 will be honored? And just how can any researcher NOT honor an agreement with a Native American tribe and sleep at night? I mean ignoring their wishes and beliefs for their own good? Because you know better than they do? Usually I am the first to say that the concept of "white mans guilt" is stupid and abused but really in this case it seems like they must be from another planet?.

    Kind of reminds me of that STNG when they are asked to relocate some Native Americans from a Planet and you can just see the character of Picard thinking, "You want me to do what???"

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

    by melikamp ( 631205 ) on Thursday April 22, 2010 @03:30PM (#31944284) Homepage Journal

    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 culture, even in spite of our genes.

  • by WastedMeat ( 1103369 ) on Thursday April 22, 2010 @03:38PM (#31944414)
    ...and any issues they have with controlling their airspace are probably rooted in the fact that for several days per week they have multiple helicopters continuously bringing in construction supplies, food, etc, making trips about once every 20 minutes. Having their supply lines disrupted for aerial tourism would probably be a significant issue.
  • by The MAZZTer ( 911996 ) <<megazzt> <at> <gmail.com>> on Thursday April 22, 2010 @03:47PM (#31944580) Homepage
    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?
  • by Anonymous Coward on Thursday April 22, 2010 @03:47PM (#31944584)

    "...and theories of the tribe's geographical origins that contradict their traditional stories."

    Their other objections I can sympathise with, but their objection to research which shows they traditional stories up for the nonsense they are doesn't bother me at all, and it shouldn't bother them, unless they want to live a lie for the rest of eternity.

  • Re:Get it Back (Score:5, Insightful)

    by paeanblack ( 191171 ) on Thursday April 22, 2010 @03:48PM (#31944596)

    I'll say the same thing here that has occurred to me with several other decisions. It's amazing to me that there could be any controversy over this or otherwise a widespread view that there is any other way to handle it.

    Remove the "genetics" aspect from the issue; let's imagine that the tribe consented to have the researchers take photographs to study, say, body morphology, or whatever. The researchers then use those photographs to also analyze facial morphology.

    Should the research subjects be able to control in perpetuity how those photographs can be looked at and thought about? Should they be able to control what tools are used to examine the photographs? (i.e. eyes only, no lenses or calipers...not even eyeglasses) Or can the researcher analyze those photos as they see fit and draw whatever conclusions they wish?

    Both a photograph and a DNA sample are snapshots of some aspect of a person's individuality. Both yield medical data. Both can be used to track and uniquely identify a person (except for twins). We're just far more comfortable with the concept of photographs.

    If this case were about photographs, would the Slashdot crowd react in the same way, or would we dismiss the tribe as backwards aboriginals afraid of losing their soul? Informed consent is a very good policy, but does our discomfort stem from the breach of policy or the genetic bogeyman?

  • Re:Needless Drama (Score:2, Insightful)

    by Biggseye ( 1520195 ) on Thursday April 22, 2010 @03:49PM (#31944644)
    the big deal is that they have no right to do anything other than was agreed to. Medical researcher have to live by the same code of conduct that every one else does. having a blood sample in ones position does not make it OK to do any form of testing you desire. There are legal and moral issues that cover every medical procedure. It would be the same as if a hospital took your blood to check for an infection and decided to forward your sample to a lab to do genetic testing with out your permission. The courts have held repeatedly that it is a violation of your rights and a violation of contract law to do so.
  • Re:Interesting... (Score:2, Insightful)

    by fuzzyfuzzyfungus ( 1223518 ) on Thursday April 22, 2010 @03:50PM (#31944658) Journal
    Did you miss the part where I noted that, if the researchers violated the terms of the informed consent agreement, that would be "all kinds of unethical"?

    I even put it before the other stuff, just to make it especially obvious that it was the primary consideration. If the researchers didn't have informed consent for their use of the samples, they can hang out to dry for all I care. "Career ending" is just fine by me.

    The point that I was addressing, in the second bit, was that it was not clear that the informed consent had been violated, just clear that the research subjects didn't like the results of the research. If you have informed consent, nothing(except the arguably ignoble and unethical habit of lying to preserve your access/funding supply) requires you to deliver only what people want to hear.
  • Re:Damn them! (Score:4, Insightful)

    by mea37 ( 1201159 ) on Thursday April 22, 2010 @03:52PM (#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:3, Insightful)

    by pclminion ( 145572 ) on Thursday April 22, 2010 @03:54PM (#31944728)
    Go for it. Just don't associate it with my name. How fucking hard is that?
  • by NiteShaed ( 315799 ) on Thursday April 22, 2010 @03:59PM (#31944800)

    Unfortunately, if they can't understand the consent form then they can't give informed consent, can they? This could be remedied by helping them to understand the consent form, which was done. However, if you purposefully mislead people, then again, they didn't give informed consent at all.

    I agree, that's tricky, but ultimately it comes down to it being done in good-faith. If this was explained to the people (which seems to be the case), and if the people seemed to understand and agree at the time (which I see no evidence against), then the researchers acted in good faith. Just because they didn't foresee certain consequences (such as their creation myth being busted) doesn't mean that they did not give informed consent.

    If I sign a paper before surgery that states the doctor has my permission to remove my appendix because it is infected, then I have given him informed consent. But, once in there, he can't just decide that my gall bladder, also an extraneous organ, looks like something his research students could use in their doctoral theses.

    I think that's a poor example. These people signed on for broadly defined "medical/behavioral" studies. Their main interest was the diabetes study, and if that's all they were interested in giving consent for, they should have said so.

    They didn't just use the DNA for something the Havasupai didn't want them to use it for. Doctoral students and other researchers effectively made a profit from the DNA which was obtained in an unethical manner.

    Grad students are researchers. That's how a lot of research gets done. Who do you think would be doing this work, when it's a university who shows up at your door and says "We'd like to study your genetics"? Further, what's wrong with profiting from this research (either by gaining a degree, or monetarily)? Lets say they actually came up with a cure for diabetes during the course of the study. Are they then barred from marketing this new drug? If so, how does anyone get this treatment? Like it or not, volunteers are the basis for medical study, people profit from the results of the research, and hopefully, overall, life improves all around due to new treatments.

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

    by HeckRuler ( 1369601 ) on Thursday April 22, 2010 @03:59PM (#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.
  • by Biggseye ( 1520195 ) on Thursday April 22, 2010 @03:59PM (#31944818)
    not relevant. The FAA, such as it is, is the only agency that controls the skies about the US. Even those that are over Indian Reservation. I live in Michigan and we have many here. While the Indian Nations are sovereign on that land, it does not extend to polluting the ground, water or air. It does not extend to control of the Air space above the land, they no more have control or that air space then you do over your home. As for interfering with their supply runs, this is a matter of scheduling. Just as it would be if they were flying in and out of a commercial airport.
  • Re:Damn them! (Score:4, Insightful)

    by RightSaidFred99 ( 874576 ) on Thursday April 22, 2010 @04:02PM (#31944858)
    No, not like that at all. Nice story, though.
  • Re:Damn them! (Score:1, Insightful)

    by Anonymous Coward on Thursday April 22, 2010 @04:07PM (#31944928)

    You have the right to do plenty of things that I object to. I object to you telling your friend that I am a total asshole, or that what I'm wearing is ugly as sin, and if you saw me getting drunk and making a fool of myself I would object to you telling the story to everyone you know. But you sure as hell should have the right to do those things.

    And, of course, in this case the volunteers apparently signed contracts that allowed all of this. So it's more a case of "read the damn fine print" than anything else. Should some fine print be disallowed? Possibly. I could see how, if the contract was designed to be misleading, it would be thrown out. But that's a different kind of discussion.

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

    by nbauman ( 624611 ) on Thursday April 22, 2010 @04:38PM (#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?

  • Re:Damn them! (Score:2, Insightful)

    by Hatta ( 162192 ) on Thursday April 22, 2010 @04:38PM (#31945420) Journal

    First, did they understand what they were signing?

    Why did they sign if they didn't understand it?

  • Re:Get it Back (Score:4, Insightful)

    by lgw ( 121541 ) on Thursday April 22, 2010 @04:59PM (#31945712) Journal

    Should the research subjects be able to control in perpetuity how those photographs can be looked at and thought about? Should they be able to control what tools are used to examine the photographs? (i.e. eyes only, no lenses or calipers...not even eyeglasses) Or can the researcher analyze those photos as they see fit and draw whatever conclusions they wish?

    That should all depend on the consent form signed, shouldn't it? If individuals want to release their data for only a certain kind of study, whether that's DNA, photographs, or shopping history, and reasears decide to do something else with that data - well, what does the consent form / privacy policy say? It's a contract, like any other (and like any other, if you misrepresent a written agreement to someone who can't understand its implications, the statements you make and not the written form becomes the contract).

  • Re:Get it Back (Score:5, Insightful)

    by EdelFactor19 ( 732765 ) <adam@edelstein.alum@rpi@edu> on Thursday April 22, 2010 @05:04PM (#31945774)

    I would say its no different if its a photograph. A key component of performing valid and recognized research is informed consent. I absolutely expect to control in perpetuity how my photograph / dna / etc are researched. I'm not as concerned with the tools, whether its a magnifying lens or a digital something or other; but what's being searched for is separate.

    The fact that you had to use the word "also" as in "also analyze facial morphology" illustrates the line very clearly. I/you/we/whomever didn't consent to that; we consented to body morphology. If you want to analyze it for that come back and get my consent or piss off.

    Why do I hold this control? because its my information to start with. I gave you access to it in return for something under some contractual terms.. Now you are trying to change them after the fact without my option or giving me anything in return. More importantly, you are trying to do something I likely would never have agreed to in the first place.

    Here's a better example, instead of a photo, let's pretend its my credit card. If I go to the store and buy a widget from you and pay with my credit card, I consent to give you the credit card briefly for the sole purpose of executing this transaction. You are not entitled to copy my number, to run background checks on me, to withhold it from me, to give it to others, or to charge other things to me. I gave it to you to execute a transaction that's it.

    So to answer your question I would react that exact same way. I view it no differently than fraud / misrepresentation and potentially breech of contract.

    To answer a separate question; the researchers are free to draw whatever conclusions they want no matter what. Whether they are valid conclusions, or have any evidence to substantiate the claim is another story. They are free to analyze these photos in a manner which is consistent solely with advancing the purported goals and activities that are consistent with disclosure, studying for trends that are wholly unrelated to the study at hand which was disclosed does not meet this requirement.

    Think about this in the reverse case. Go buy a playstation3 or an iphone, shouldn't it be yours to do with it what you will? Or does Sony/Apple have a right in perpetuity to change the conditions and terms, add and remove functionality as they see fit at any time whenever they like without your consent. Doesn't seem very different to me. You want my data you play by our rules. I'm not giving you my blood, i'm giving you a license to analyze it. Come to think of it more ironically Apple does exactly this in regards to tools now. Apple software "can only be run on apple branded computers" and iphone software can only be written in "approved languages".

    Funny, its always important that IP, copyrights, contractual, and privacy rights of corporations is always protected so sternly, but so quickly trampled when they are of an individual, the ones who are actually supposed to be protected by laws.

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

    by melikamp ( 631205 ) on Thursday April 22, 2010 @05:33PM (#31946132) Homepage Journal
    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:Damn them! (Score:2, Insightful)

    by Mr. Slippery ( 47854 ) <tmsNO@SPAMinfamous.net> on Thursday April 22, 2010 @06:25PM (#31946898) Homepage

    And why bring race into this?

    Race was brought into this in 1492, when the genocide of the Native nations began. It continues today, with ongoing treaty violations. Neglecting to discuss the past and present vast influence of racism on policy, hiding behind some "let's not bring race into this" excuse when in fact the whole issue is rooted in beliefs about race, is not honest and rational behavior.

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

    by PsychoSlashDot ( 207849 ) on Thursday April 22, 2010 @08:06PM (#31948420)

    Why do I hold this control? because its my information to start with.

    The following is me playing devil's advocate but I think it's worthwhile.

    No. DNA is not your information. It's you (at least your physicality). I still say too bad. Ownership of self is an illusion. It's the result of social convention, no more.

    If an individual was determined to carry the cure for cancer in their blood and they allowed a sample to be taken for confirmation of this theory but specifically refused researchers the "right" to synthesize or reproduce/culture that sample, what do you think would happen? A lot of people would end up cured of cancer because someone with a clue would suddenly realize that they're really an animal and act the part.

    You are food. That you aren't eaten on a daily basis is luck, pretty well.

    Personally I find the idea that an individual or small group of individuals could - let alone would - allow a sample to be taken but try to limit it's potential benefit utterly and completely repugnant. This isn't about a sample being taken illegally. This isn't about a needle when you've said "no". It's about artificially limiting potential learning for arbitrary internal reasons. Disgusting, really. We are all hungry, starving for knowledge and these people had the ability to share universally, without personal cost but instead elected to dictate who and how we can feed.

No extensible language will be universal. -- T. Cheatham