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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.'"
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
intellectual property law is philosophically incoherent. it is your moral duty to ignore it or sabotage it
>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 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...
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
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
intellectual property law is philosophically incoherent. it is your moral duty to ignore it or sabotage it
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?
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.
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.
Motorcycles, Robots, Space Gossip and More!
...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.
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?
"...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.
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?
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.
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.
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.
Some bring out the best in others, some the worst. Some bring out far more.
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.
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).
Socialism: a lie told by totalitarians and believed by fools.
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.
"Jazz isn't dead, it just smells funny" ~Frank Zappa
EdelFactor
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.
"Oh no... he found the