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After DNA Misuse, Researchers Banished From Havasupai Reservation
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.'"
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
intellectual property law is philosophically incoherent. it is your moral duty to ignore it or sabotage it
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.
>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.
This ain't rocket surgery.
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?
intellectual property law is philosophically incoherent. it is your moral duty to ignore it or sabotage it
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.
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.
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
intellectual property law is philosophically incoherent. it is your moral duty to ignore it or sabotage it
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 , 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, 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.
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.
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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?
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 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?
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.
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