Slashdot Mirror
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
Well, even if their intentions were good, the samples were provided for a different purpose.
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.
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.
>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...
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 — a settlement that legal experts said was significant because it implied that the rights of research subjects can be violated when they are not fully informed about how their DNA might be used.
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?
intellectual property law is philosophically incoherent. it is your moral duty to ignore it or sabotage it
Go to a reservation public school like I did.
Second year of High School there was a year long course, mandatory for graduation call "Tribal Government", except it wasn't tribal government it was a year of Lakota mythology and religion. Even though I'm not a member of the tribe, I had to take it, as did folks who weren't American Indian, the school board which was 4/5th white would not allow kids to opt out because BIA funding was dependent on it being taught. A non-tribal member could not get a grade better than B+ because "they weren't capable of understanding it fully".
In biology classes we had a day during evolution of "Lakota creation myth". Again, BIA funding mandated it.
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.
Some bring out the best in others, some the worst. Some bring out far more.
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.
Beer is proof that God loves us and wants us to be happy.
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?
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.
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.
Some bring out the best in others, some the worst. Some bring out far more.
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.
"Based on the Native American Graves Protection and Repatriation Act (NAGPRA), five Native American groups (the Nez Perce, Umatilla, Yakama, Wanapum, and Colville) claimed the remains as theirs, to be buried by traditional means. Only the Umatilla tribe continued further court proceedings. In February 2004, the United States Court of Appeals for the Ninth Circuit ruled that a cultural link between the tribes and the skeleton was not met, allowing scientific study of the remains to continue."
"Robson Bonnichsen and seven other anthropologists sued the United States for the right to conduct tests on the skeleton. On February 4, 2004, the United States Court of Appeals for the Ninth Circuit panel rejected the appeal brought by the U.S. Army Corps of Engineers and the Umatilla, Colville, Yakama, Nez Perce and other tribes on the grounds that they were unable to show any evidence of kinship."
Go back and research the stance of the Department of Interior and Army Corps of Engineers, the Clinton administration pushed the NAGPRA onto these remains to keep the American Indian votes.
The Federal Government tried to suppress the science by claiming 8000 year old remains were linked to the tribes in the region.
"As expected, the scientists' documents allege the Corps and Department of the Interior agencies mishandled the case in other ways - from failing to preserve the bones' scientific integrity to being biased in favor of American Indian tribes from the beginning, topics that have long been part of the legal banter while the case was on hold."
http://www.tri-cityherald.com/2001/01/03/136458/scientists-say-corps-destroyed.html
In the waning days of the Clinton administration the site destroyed. Ultimately the scientists won in Federal Court and the remains were not suppressed.
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!
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.
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?
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.
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.
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.
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.
No, not like that at all. Nice story, though.
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
Especially when it comes to medical ethics, the wording of the contract is far less less relevant than the meeting of the minds 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.
[Fuck Beta]
o0t!
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?
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