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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
There seems to be a shortage of actual details on the settlement. Bueller? Bueller?
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Quick google search turned up http://www.dddmag.com/intellectual-property-and-biological-materials.aspx which is a summary of some of the important cases.
http://en.wikipedia.org/wiki/Moore_v._Regents is one of the "big" cases, and worth reading the wikipedia summary of, " The California Supreme Court ruled that Moore had no right to any share of the profits realized from the commercialization of anything developed from his discarded body parts."
>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.
A clash of the cultures. How sad that this has to happen in the western world of 2010. Shall we ever learn anything from history, dammit ?
Religous speak to God. Insane are spoken to by God. When all shut up, one can finally hear Shostakovich in peace
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've camped down there a few times. It's a great hike in and out and just a beautiful place to spend some time. Reserve your spots early, the space is limited.
It's hard to believe that's how Micronians are made. Why don't we see it right now by having you both kiss one another?
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.
When Christianity is at odds with a scientific interpretation of history, Christianity are the moonbats.
tribe's geographical origins that contradict their traditional stories
So, left-wing postmodern cultural relativists, where is your FSM now?
Oh don't worry, we think their religious beliefs are just as irrational. The thing is, most of us don't object to people holding irrational religious beliefs. We object to them applying those beliefs to undermine human rights and retard the progress of science. Personally, I believe in an inherent human right to privacy and to control over how my genetic information is used by others. If you want to study my genes, ask permission and I may or may not grant it. That seems completely reasonable. If a christian is unwilling to give a blood sample to be used to study the origin of man, that's fine with me too.
In short, it sounds like these natives are being irrational, but I'm fine with that so long as they don't try to impose those beliefs on me, change what is taught in government sponsored science classes at schools to something unscientific, or try to undermine the progress of science in some other way.
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
You gotta be careful about the folks that you give your essence to, Mandrake.
You really can't trust them folks who say they need your blood to do some research, or something.
Won't those Havasupai Indians be surprised when their DNA winds up in Bratislava in a murder trial.
Suspect: "Hey, but I've never been out of Arizona . . . and I don't even know where Bratislava is!"
Prosecutor: "DNA evidence doesn't lie!"
Schroedinger's Brexit: The UK is both in and out of the EU at the same time!
I wonder what is to prevent DNA studies of large, existing "captive" databases. There could be a imperative moral reason, like a new bioweapon aimed at soldiers with the military looking at prevention. But that would be different use form what these samples were obtain for.
Supposedly police DNA is just distilled to the 30-some markers used for an ID match. And the military is discarded after the soldier is discharged. But I doubt bureaucrats always carry these out.
It's been the case for a while; not too many people in postcolonial studies are big fans of science. There's a decent amount of writing accusing scientific study of non-Western cultures of "epistemic violence", by displacing another culture's explanations with Western-science-culture's explanations.
10 PRINT CHR$(205.5+RND(1)); : GOTO 10
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.
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
And I forgot Kennweick Man, science being suppressed by the Federal Government so American Indian creation myths won't be trampled on.
http://en.wikipedia.org/wiki/Kennewick_man
Even though there was little harm to the Havasupai here this case sets a critically important precedent for the future.
When you benefit from a nation built on the genocide of a group of people, you take your chances.
Nobody murdered 90% of Christians in order to build the USA.
It's just a liiiiiiiiitle bit different.
Blar.
If the Arizona State University research group violated their IRBs (Federal Title 45 CFR Part 46) by performing tests not specified in those documents, they can be in significantly deeper doo doo than being banished from one reservation. This can result in the loss of Federal research funding not just for a particular research group but for an entire institution - to say nothing of disciplinary action within the University itself. That's why, at least at our University, if you're doing research involving human subjects you have to be certified yearly on the rules and regs related to IRBs.
I'm probably not the intended audience, as I'm a right-wing secular humanist. However I think the consensus among most atheists is that all religions are bullshit, regardless of the size or standing of the culture they come from. Usually the people who defend the right of smaller groups to have their ignorance unassailed are left-wing postmodern cultural relativist Christians like Unitarians. Oh snap!
I support the Slashcott and will not be reading or commenting from 2/10/14 to 2/17/14. Beta is steaming pile of dog shit
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.
And I forgot Kennweick Man, science being suppressed by the Federal Government so American Indian creation myths won't be trampled on.
I couldn't find anything in the link you supplied that appears to support your claim. Care point out the relevant passages?
This ain't rocket surgery.
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?
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.
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. I wouldn't even want to lend my car to someone without having an idea of what they plan to do with it and that's far less of a privacy/security issue than DNA and medical records. To put this another way, what's the good reason (that doesn't involve covering up abuses) why full disclosure and informed consent should not be standard policy?
It is a miracle that curiosity survives formal education. - Einstein
It is so typical for a right-wing secular humanist to diss the left-wing postmodern cultural relativist Unitarian Christians for suggesting we stay off their lawn!
Though it's also good to remember that there's slightly silly bullshit and then there's actually harmful bullshit.
One that hath name thou can not otter
"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.
Hm, was it at least interesting? (plus...many native mythologies and faiths have certain adequate amounts of wisdom in them; popular culture wants to convince me it is quite universally the case with North American Indians...is it?)
Most importantly, do they actually believe in old mythologies (I hear there were many new movements in response to expansion of Europeans...) or is it mostly treated as cultural / traditional thing to know?
One that hath name thou can not otter
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!
we're not talking cell phone company contracts here, we're talking common decency
if you won't be decent to your fellow man in your relations with them, and instead use the logic that comcast uses when they gouge your bill, then you will reap ill will and you won't be doing any research again
comcast and verizon get away with their gouging because they are abusing an imbalnace of power. you don't benefit from the weasel room you cite above when the footing is between equal entitities
i fear for whomever considers you a friend or girlfriend, in such low regard do you value their trust. assuming you have any friends. with the colossal lack of common decency you display, i don't think anyone would want to be around you. you're a snake
intellectual property law is philosophically incoherent. it is your moral duty to ignore it or sabotage it
It takes a lot of effort sequence DNA and odds are the university hadn't actually sequenced the entirety of the DNA that was provided, but just the relevant chromosomes. Likewise, depending upon when the sequencing was done their might be errors or incomplete blocks in the sequences that modern equipment could correct for.
No, it wasn't that interesting and it was terribly ignorant of their own history.
On one hand we have the Winter Counts that show those peoples saying exactly when they got to South Dakota, pushing out the Cheyenne and taking control of the Black Hills.
http://wintercounts.si.edu/
http://en.wikipedia.org/wiki/Black_Hills
And the religion has them being created there, and the Black Hills remain the push button issue with the Lakota because they claim to always have been from there, created there, etc, even though they didn't live there and it was taboo to sleep in the Black Hills.
I'd guess that 1/8th of the folks on the Reservation follow some of the old mythology and know some of the language. Theres more of a pan-American Indian religion over the last 40 years with tribes who had nothing to do with the Buffalo and horse cultures getting excited about Buffalo, thats a real shame because its destroying their own heritage.
Lakota religion lacks the morality lessons that the mainstream religions have for a base, the only one that remains important still is Pte Ska Win.
http://en.wikipedia.org/wiki/White_Buffalo_Calf_Woman
Still better than Kansas, Texas, and Dover, PA, because they clearly label their take on creation as 'myth'.
Slashdot's rate-of-post filter: Preventing you from posting too many great ideas at once.
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?
I'm not sure what you mean by "get back the research"... do you mean force it to be deleted on the grounds that the data was obtained unethically? Because that would actually be an even creepier precedent. Imagine: "Oops, one of the researchers fucked up the informed consent forms. All our results are thoughtcrime now. Better delete 'em before we get sued."
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.
"...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?
Those places make you sit for a year in a "government class" but teach the Bible?
Thats what Tribal Government class has been like on Cheyenne River for the last 30 years.
After they off the palefaces, which of THEIR intra-racial conquests should stand and which should be revoked?
"This post is an artistic work of fiction and falsehood. Only a fool would take anything posted here as fact."
Well, Western science (hence also culture, at least somewhat...) is doing something right for quite a while now.
One that hath name thou can not otter
because frankly far too many people, researchers included, rely on people trusting then to do what they said not what is signed. It isn't beyond reason to believe that many of these tribal members are not well versed in contract law.
* Winners compare their achievements to their goals, losers compare theirs to that of others.
...carbohydrates. Prior to the adoption of a high-carb western diet, the Pima indians were just fine too. There's no mystery about why diabetes happens - trying to blame it on a genetic code is like asserting that smoking doesn't cause lung cancer, only a certain genetic code does.
That all being said, it doesn't sound like there was an malfeasance here, or particularly egregious profit motive -> if they were taking their DNA and creating patentable drugs with it, and making billions, I can understand, but simply exploring history doesn't seem like something that should be punished by some sort of civil fine.
Unitarians don't believe in the divinity of Jesus, so by definition are not Christians. You might call them followers of Jesus.
Gamingmuseum.com: Give your 3D accelerator a rest.
It's highly unlikely that they did full sequencing on these samples. Full sequencing is expensive and time consuming.
Generally they only sequence the specific parts of the DNA that the particular research happens to be interested in.
- Give a man a fire and he's warm for a day, but set him on fire and he's warm for the rest of his life.
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.
Which is where we find out that you're apparently not actually serious about consent and medical privacy issues -- that whatever principled stance you ostensibly have about these things simply evaporates if you get a chance to push forward another agenda that's important to you.
I suppose there's nothing wrong with outright stating that you believe it's more important to knock down any religious or cultural origin narratives that conflict with the modern scientific ones. Tension between principles is inevitable, and it's there you find out who really believes in them But don't be surprised if you get attacked by people who are actually serious about consent and privacy issues... and are willing to let the marketplace of ideas handle issues of belief.
Tweet, tweet.
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?
In order for science to work, the public must be able to trust the scientists. The subjects need to be able to trust that when a scientist says, "You will not be exposed to any danger from this experiment," or "Your information will be kept private," that that scientist is not going to go back on his or her word. There have been too many cases of scientists playing God, from Milgram to Tuskegee to the Nazis.
If that trust breaks down, then people will lose their trust in both the scientific process and the results it obtains.
The Federal Government tried to suppress the science by claiming 8000 year old remains were linked to the tribes in the region.
Sorry, but I still don't see any evidence to support your claim that the U.S. government has made an attempt to suppress science. You've made several logical leaps and included some completely unsubstantiated allegations here, but you're still short of actual proof. Possible (but merely alleged) incompetence on the part of the Army Corps of Engineers is not the same thing as deliberate suppression of science. Your claim that the Clinton administration "pushed NAGPRA onto these remains to keep the American Indian votes" is not only pure opinion on your part, it's not at all relevant since even if it's true, it doesn't amount to the deliberate suppression of science, only politics as usual.
I get that you didn't like the Clinton administration and I'm fine with that but that doesn't mean you can state that they had something to do with the destruction of the discovery site without providing some evidence. I wasn't exactly a fan of the G.W. Bush administration but that doesn't mean I'm going to say that they were responsible for the 9/11 attacks as some claim since there's nothing to back it up.
This ain't rocket surgery.
If I voluntarily gave someone a sample of my blood/tissue/whatever, along with demographic but not personally identifying information about myself, I wouldn't give a damn what they did with it or the information they derived from it. The donation was voluntary so it's not like they're experimenting on *me*, my physical body, against my will, so it's not a physical invasion of my privacy; and whatever they find out from my DNA only tells them things about my people, not about me in particular, so it's not an informational invasion of my privacy; so what do I care?
Lets try an analogy: say they were researching some congenital skin condition that manifests along the spine, and they took lots of photographs of these people nude from behind, with their consent. Then while looking at this photographic data they notice some kind of correlation regarding hip shape or buttock size and research that as well. There's no names associated with those asses, so they're not going to drag your butt print in as evidence to a murder trial; and it's not like they're coming into the village and demanding that people pull their trunks down, they're just using data they've already collected. So who is harmed? Why should anyone object?
-Forrest Cameranesi, Geek of all Trades
"I am Sam. Sam I am. I do not like trolls, flames, or spam."
Well, the US Justice Department sued on behalf of the tribes. The US Department of Interior's Bureau of Indian Affairs sued on behalf of the tribes and the US Army Corps of Engineers covered the location up so further evidence and research couldn't be done. Since the Clinton Administration ran those three agencies, its pretty clear who was behind it.
Now 60 Minutes covered this and thats were the out and out allegations of pandering for votes happened, oh and in the Indian Times, but I don't have links for those.
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
Re Godwin,
Umm, yes you did. You win the title of "Troll" for this discussion and lose (with no demerit to your position, just the personal shame of misbehaviour).
For every problem, there is at least one solution that is simple, neat, and wrong.
Look, I don't lend my car to strangers, either. But your position is a bit sociopathic.
Yes, they were naive. But they were misled, too. Why are you blaming the victims? If somebody tells you they're doing something to help you, whether that's analyzing your DNA or installing an internet connection or doing your taxes or removing your gallbladder, then they violate your trust, that's wrong. Whether you should have been suspicious of them is a different question.
Universal mistrust doesn't scale. I can't get through a single day without trusting a bunch of strangers not to veer into my lane and kill me, trusting my landlord's employees not to go into my apartment with their maintenance keys and steal my stuff, and trusting my bank not to steal my money. These are calculated risks, but I can't be right all the time. I'd say that trusting researchers from a legit university to do what they said is a pretty reasonable thing to do. But these people got burned.
Yes, we all have to be careful, and try not to get suckered. But traditionally, we don't punish suckers. We punish deceit. I don't know how you can have a sane society otherwise. And I think you'll want more sympathy than you've shown here on that distant future day when you make a mistake and find that you're the sucker.
If you understand how the U.S. law system works, you know that the DOJ, BIA et al has no choice but to do what it must to defend existing federal law. It doesn't matter whether the administration in power likes it or not. While I have no doubt that the Clinton administration did whatever it thought would get it more votes (I'm no fan of the Clintons either, BTW), that's still not the same as suppression of science. Sleazy? Yeah, certainly, but there's nothing new about sleaze in American politics.
This ain't rocket surgery.
As far as I can tell, this use falls outside the consent form signed when the samples were collected.
I hold:
1) We should have little specific sympathy for the tribesmen's origin myths being challenged
2) We should take that violation of consent seriously - it's not about property, it's about the integrity of human subjects research and the validity of the promises we make when we deal with people
3) The data, being already collected, should not be destroyed out of any property-like concerns
4) The data is nontheless a black eye on an academic unit that has breached its promises. Their IRB should be furious. In order to regain the trust of those they have betrayed, it is likely a very good idea to bury the data unless real (and retroactive) consent can be acquired. Whatever people were responsible should be dealt with using normal IRB-like practices.
5) If there is not yet strong IRB-type protection for this kind of research, it needs to be established post-haste. IRBs are not (only) meant to deal with legal threats - they protect the reputation of research. It is entirely appropriate for them to decide that legally permissible things are not worth the bad PR (and they have done so many times).
For every problem, there is at least one solution that is simple, neat, and wrong.
And Army Corps of Engineers destroying the site where the remains were found in spite of a court order protecting the site?
Defending Federal Law?
When Christianity is at odds with a scientific interpretation of history, Christianity are the moonbats.
tribe's geographical origins that contradict their traditional stories
So, left-wing postmodern cultural relativists, where is your FSM now?
Everyone can see the folly of other people's religious beliefs, but no one wants to turn a critical eye on their own.
Cristianity isn't singled out, and isn't entitled to an exemption either way. But the FSM is reserved for con artists who make up "pretend it isn't God" creators to get around the law.
Sheesh, evil *and* a jerk. -- Jade
From what I can determine, the ACE didn't "destroy" the site, they just covered it up so it wouldn't be vandalized by zealots on either side of the issue. At worst, they just slowed things down a bit.
This ain't rocket surgery.
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.
...or did you think the US government gave them the "good" land?
Bullshit! I am calling shenanigans. You have NOT visited any "primarily agrarian" reservations where "most" indians are eating healthier food, and doing physical labor buy cultivating said food. You sir are 100% completely full of shit and I'm calling it.
Wanna know how I know you're full of shit? Because it is Arizona. Look at a map and look at average temperatures. Nobody is "subsisting" out there. Not even the Indians. And yes, I have traveled extensively through the state and I've been to plenty of reservations. You might be right if we were talking about (eastern) Oklahoma but we're not.
do you mean force it to be deleted on the grounds that the data was obtained unethically? Because that would actually be an even creepier precedent.
The research should absolutely be deleted as it was done on subjects without their consent or knowledge. The precedent set by using that research would be the total violation of privacy, as it says its alright for government institutions to use deceit to get personal information.
That you see a problem with stopping this type of action on the part of the government says a lot about you. It says you think the government has the right to deceive you and abuse the agreements it makes with you.
I say you haven't given this subject any thought at all. If you have, then it says a lot about how you value your, and more importantly your neighbor's right to privacy. To me it's really scary that you would want to steal my privacy.
"while democracy seeks equality in liberty, socialism seeks equality in restraint and servitude." de Tocqueville
Mod this man up. He gets it.
"while democracy seeks equality in liberty, socialism seeks equality in restraint and servitude." de Tocqueville
ASU is publicly funded and is steered by a committee appointed by the governor, but calling it part of "the government" is a bit of a stretch.
Le français vous intéresse?
researchers got permission, but the finding where counter to their made up myths, so now they are angry.
You don't like science? Fine. Keep you ass in the Canyon and let your 'Creator' amputate the limb for you.
Problem will solve itself in a couple of generations.
FYI: According to the courts, when you give a sample or donation of blood, you have no claims to it. NONE. So the university is being exceptionally kind here.
The Kruger Dunning explains most post on
Here's an interesting question. Lets say it were money that I had embezzled from my company and then invested wisely for a few years before they found out and had me charged with a crime. (I'm using embezzlement because it's closer to the present case than simple theft as embezzling implies that you were given the right to manage the money with the clear expectation that you would only use it for certain things but did other things with it to benefit yourself). Should I get to keep the returns I received on the money while it was in my possession? I'm not a lawyer, but I'm pretty sure that all that ill gotten gain would go back to the company I embezzled the money from. In this case, it would make perfect sense to me that the tribe should get full ownership of all the IP created from the use of the DNA and have the right to demand that all journals or other publications that printed anything based on the study of that DNA cease printing/distributing that information.
Rules of Conduct:
#1 - The DM is always right.
#2 - If the DM is wrong, see rule #1
It doesn't matter what they used to do the research. If you didn't ask consent to do it, you don't get consent to do it. What's so hard with such a concept?
The NYT story was pretty good, but Nature had an even better story (from the scientists' perspective). For the subscription-challenged among you:
http://blogs.nature.com/news/thegreatbeyond/2010/04/native_american_research_lawsu_1.html
Native American Research Lawsuit Settled - April 22, 2010
Posted for Rex Dalton. ...
The researchers denied the charges then, and still do. Mick Rusing, a Tucson attorney representing the one remaining researcher defendant, notes that all those charges were rejected by judges as the case moved through state and federal courts. The remaining claim in state court related to alleged negligence. ...
The tribal government will receive no money, state attorneys say. The award will cover legal expenses [emphasis added] for the 41 tribal members who remain as plaintiffs, with those members dividing the amount left after the legal costs, their attorney says. The exact details of those distributions are private, say Stephen Hanlon, a Washington, DC attorney for tribal members; he adds he isn’t being paid. ...
Geneticist Therese Markow – the former ASU leader of the project and the remaining researcher defendant – told Nature: “I’m glad it’s over; but it never should have happened. There was no basis for any claim. They would have lost had it gone to trial.”
When the project began, the ASU Humans Subjects Committee approved genetic studies of diabetes, schizophrenia and depression. Markow, who is now at the University of California at San Diego, says the research was conducted properly, tribal leaders were briefed on the studies, and patients were treated with respect. ...
Markow’s attorney, Rusing, said at least a half dozen of the original suing tribal members were shown not to have been in the study. Markow added that plaintiff Tilousi “wasn’t in the canyon” during the study. ...
“Tribal members were mislead by various parties,” says Markow. “This created suspicious sentiments; made them feel vulnerable. That was a shame; a travesty.”
In the end, she says, these misconceptions spread through various Native American communities making them more suspicious of researchers.
“It is a bitter irony that a group of people who historically have been under-served with respect to health-related research may now become even more under-served,” says Markow.
That you see a problem with stopping this type of action on the part of the government says a lot about you. It says you think the government has the right to deceive you and abuse the agreements it makes with you.
Yeah, as can be understood by reading the discussion of the Sony EULA story earlier this afternoon, such deceit and abuse is the sole right of corporations. When they do it, it's their natural right supported by law; when the government does it, it's evil.
At least that's the way it is in the US these days. YMMV if you live elsewhere (though it's sorta hard to find a country where a large corporation doesn't have more social and legal power than most of the citizenry).
Those who do study history are doomed to stand helplessly by while everyone else repeats it.
"Oops, one of the researchers fucked up the informed consent forms. All our results are thoughtcrime now. Better delete 'em before we get sued."
Uh, yeah, that's how it always works.
If you fucked up the informed consent forms, you don't have informed consent.
DRM: Terminator crops for your mind!
If this was about aliens on another planet, would we be blithering on and on about 'first contact' rules? I mean I feel like asking because from a lot of the posts here, they might as well be aliens on another planet - and not human beings with all the understood rights given to them by the United Nations, amongst other institutions.
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
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.
So in other words, in your case, the researchers were open and honest with you and your "dear lady," therefore it is okay for them to be dishonest with a few poorly-educated native Americans?
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.
That's the thing. The determined that the researchers in question had not received the proper authorization, and thus the contract was not legally binding. Because the people providing the samples often could not understand the written contract, they had to rely on what the researchers (apparently grad students) told them, and what they were told may not have been complete or correct. That can cause a court to void an otherwise "legally binding" contract.
And remember, that is what it is, a legally binding contract.
Funny thing about that. Scientists performing experiments are held to a higher standard than, say, payday lenders or used car salesmen. There is no expectation of caveat emptor when dealing a scientist. A scientist who says one thing while pushing a legally binding contract that says another is acting against the standards of his or her profession.
"do you mean force it to be deleted on the grounds that the data was obtained unethically?"
Eh yes. Otherwise, doing unethical research or not, would just be an accountant's puzzle to solve: does the outcome of the research weigh up against the fine we're going to have to pay.
Religion is what happens when nature strikes and groupthink goes wrong.
Sounds like copyright legislation and every instance where our elected representatives have extended the term.
Except you could also consider that European settlers had a vaccine to smallpox that could have been traded/given to the Indians
Not really. Smallpox raced ahead of European settlers so the majority of dead died before Europeans knew they existed. Whole tribes could have been wiped out, leaving no history behind.
I see, in your world one or the other, corporations or government, has the right to abuse people? How about neither?
To tell the truth I don't see how you made the leap to the idea that I support invasion of an individual's personal privacy by corporations, or by anyone/any_organization, for that matter.
Our constitution guarantees us the right to be secure in our persons and papers. And, I truly believe that if the founders of our constitution had understood what technology was to come they would have named this type of abuse of our freedoms specifically, as they specifically named the technologies/methods used in their day.
"while democracy seeks equality in liberty, socialism seeks equality in restraint and servitude." de Tocqueville
IT's all about people feeling sorry about a fat native crying.
I don't think so. Speaking as a wasp diabetic, type 2, the research should have provided a link. Unfortunately, the link as others have pointed out, is likely far more related to the modern diet than to any one specific genetic factor.
What every respondent here has failed to ask, is: "Did they find what they were looking for?" Barring info to the contrary, I have to assume that they did not manage to find that "smoking gun". What pi$$e$ me off, is that no one else here even asked the question. And you call yourselves Homo-Sapiens?
I do not know these people, but I do have extensive experience with several other tribes, and between the genocide we have visited on many of them, and our current policies, I can state with a reasonable certainty, that these folks are reasonably intelligent, and that they have learned to both like the diet we provide, and how to game the system. Had there been a magic elixer developed from this research that really could improve their lifespan even beyond the 20 years that our modern medicine has already provided them if they can dodge the diabetic bullet, I suspect the benefits to all mankind would have rapidly accrued, and that there would not now be the hullabaloo about 'Informed Consent'.
Rant mode ON.
Unfortunately for a lot of us, that magic pill has not been brought to market if it does indeed exist. So far, it appears that the most promising treatments appear to be related to some of the stuff on the shelves outside the pharmacists authority. The drug companies have tried to get patents on some of it, and the Patent office, because the stuff is natural, laughed their asses off while pointing the applicants at the door.
So what do they do next? Simple really, now they are trying to get stuff like the Chondroitan Sulfate and Glucosamine and all patent medicines like it, declared as something the FDA has authority over so that it requires a prescription to get it. St. Johns Wort, comparable to Prozac & probably fewer side effects like obesity, and Saw Palmetto is comparable to all the fancy FloMax stuff for prostate problems. The cost to you? Will be 50 to 1000x what you can buy it for at Wallies today. Such BS is their way of trying to inject themselves into the revenue stream, and when you next are in touch with your congress critters, make sure the vote you cast next time depends on how they voted no on any such legislation.
Rant mode OFF.
--
Cheers, Gene
I'm guessing you've never taken any classes in ethics. A thief is a thief is a thief.
If the person specifically said they couldn't reproduce it and the researchers weren't smart enough to secure that right in the first place, i think the researchers would be fired.
Would people be angry with him? Yes. But he absolutely has the right to make that decision, its his or her body.
Here's a twist, the person was a jehova's witness, and you just happened to get just enough of his blood to test but it was destroyed.. Does that give you the first to forcefully take more from him?
If its such a simple right thing to do then when you go back for permission it will probably be granted. If it was something they never would have agreed to in the first place, why does this matter.
DNA might be a factual thing, but the vessels its found in are not. My blood, my saliva and my cells are mine, they are not yours, they are not the communities.
Granted I'm a liberal, and I don't know what your stance is, but it would only be more ironic if you were a conservative.
"Jazz isn't dead, it just smells funny" ~Frank Zappa
EdelFactor
Tribe agreed to letting them take blood.
Tribe did not like what they heard. (being inbred, being from asia)
Tribe decided to bitch using a loophole (people didn't understand what they were signing)
Tribe gets paid ($700K, after a $1.5M lawsuit)
Be seeing you...