After DNA Misuse, Researchers Banished From Havasupai Reservation 332
bbsguru writes "A court settlement has ended a controversial case of medical privacy abuse. From the NYTimes: 'Seven years ago, the Havasupai Indians, who live in the deepest part of the Grand Canyon, issued a 'banishment order' to keep Arizona State University employees from setting foot on their reservation, an ancient punishment for what they regarded as a genetic-era betrayal. Members of the tiny tribe had given DNA samples to university researchers starting in 1990, hoping they might provide genetic clues to the tribe's high rate of diabetes. But members learned their blood samples also had been used to study many other things, including mental illness and theories of the tribe's geographical origins that contradict their traditional stories.'"
Damn them! (Score:2, Insightful)
Re:Damn them! (Score:3, Insightful)
Well, even if their intentions were good, the samples were provided for a different purpose.
Re:Damn them! (Score:2, Insightful)
Also mades it harder for legitimate research (Score:5, Informative)
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.
Re:Damn them! (Score:4, Insightful)
Re:Damn them! (Score:4, Insightful)
Re:Damn them! (Score:4, Insightful)
Re:Damn them! (Score:3, Interesting)
If the studies had really revolved around matters related to the tribe's diabetes problem, then I imagine the university would've raised that argument.
TFA does kinda-sorta imply that the type of study you're talking about is possible in the realm of genetic research, which is all well and good; but nowhere do I see any indication that it's what actually happened. In fact, I'd like to know how they'd go about that since they didn't find a genetic link to the diabetes problem in the first place.
If you want to argue that reserachers shouldn't need specific concent to broaden the uses to which DNA is put once collected, then make that argument. It is a legitimately debatable point, though in this instance I believe the cross-cultural issues will tip the balance toward requiring concent. But come on - don't hide behind counter-factual interpretations of what happened; it just makes our culture look that much less worthy of trust.
Re:Damn them! (Score:5, Informative)
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.
Re:Damn them! (Score:4, Insightful)
Or alternately
"The problem seems to be that they didn't like what happened later and realized that they hadn't understood what they signed."
Even among native English-speakers, it is not unheard of for a signature to be considered invalid if it's later determined that the signer didn't really know what he/she was signing. This isn't something you'd want to rely on - it's obviously best to know what you're signing before you sign it. But this sounds like it was far removed from the ideal scenario for truly informed consent.
We don't know how the document was explained to the individuals, because we weren't there. No malice would've been necessary for there to be a miscommunication about what was happening; I'd be thoroughly surprised if it had been fully explained and understood.
Given that we don't know exactly what was said, based on the way each side has framed its argument it sure sounds like the Native Americans only intended one use for their blood, the issue was never explicitely discussed, the researchers didn't understand the donors' expectations or the sensitivity to the matter in their culture, and then you get what we have here. If that's true, then the real fault is a serious lapse of judgement on the researchers' part.
Everyone involved may have acted with good faith and good intentions, but if you want to work with other cultures, and trumpet how well you work with other cultures, then you need to be aware of their point of view.
Re:Damn them! (Score:4, Informative)
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.
Re:Damn them! (Score:4, Informative)
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 [wikipedia.org]
Especially when it comes to medical ethics, the wording of the contract is far less less relevant than the meeting of the minds [wikipedia.org] 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.
Re:Damn them! (Score:5, Insightful)
The investigators treated the Havasupai the same way they treat their own families when they look for a genetic disease.
The Times had another story about a doctor, James Lupski, whose family had the colorfully-named Charcot-Marie-Tooth disease, who got researchers to do DNA studies of his family. http://www.nytimes.com/2010/03/11/health/research/11gene.html [nytimes.com] In sequencing their DNA, they found that there were related conditions in other members of their family who everybody thought were healthy. They got a lot of useful information for that family.
The investigators explained what they were doing to the Havasupai, as best as they could to subjects who don't speak English that well and who don't understand the science of it that well. This is a common situation with well-established rules. As the TFA explains, they got informed consent to do exactly what they did. This was for the benefit of the Havasupai.
The alternative is to never do studies on poorly-educated people. Is that what you want?
There is no such thing as "just studying diabetes." In DNA studies, they try to get all the useful information they can (or can afford), as they did with Lupski. That way they can look for patterns.
Now a few members of the Havasupai want to complain about it (for their own benefit), so they've convinced the other tribal members that there is something wrong with doing standard medical studies on people with a poorly-understood disease. The subjects agreed, and now they're going back on their word. They got away with it because they were in a position to blackmail the university by getting other tribes to boycott their studies.
If you want to say that the doctors also benefitted professionally and got grants for helping their patients deal with life-threatening diseases and potentially saving a few lives, yeah, OK, they did. What's wrong with that? And what about the lawyer who sued the university?
Nature had an even better article (Score:3, Interesting)
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 [nature.com]
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.
Re:Damn them! (Score:3, Informative)
That's just nonsense. The consent form said the samples were to be used for medical research. That's what they were used for. Your examples would be applicable if the samples were used for criminal checks, or market-research, but that's not the case.
In Sony's case, OtherOS was a feature that was present, and in some cases motivated people to purchase the unit. There is no comparison here.
Clauses that say a contract can be unilaterally modified at any time are generally invalid on their face, and since that's again not what happened here, not relevant.
HIPAA has nothing to do with this. Patient confidentiality was not broken during any of the studies. If you're aware of some other state or federal law you feel is applicable, go ahead and cite it, but good luck searching, 'cause I don't think you'll find anything.
Re:Damn them! (Score:3, Informative)
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.” 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 yes. They did.
Jackass.
Re:Damn them! (Score:3, Insightful)
Those damn researchers, trying to study other diseases and discover our true heritage! How dare they?!
So where do you draw the line? And what kind of signal does this send to other people who are unsure of what their DNA samples will be used for? Regardless of good intentions or the betterment of science, that's a sure fire what to screw up any trust a community might have with you and anyone looking to use DNA analysis.
Re:Damn them! (Score:3, Insightful)
The line can only be drawn at "no expectation of DNA privacy for anyone". Each of us sheds millions of skin cells every day, everywhere we go, leaving our DNA samples on everything we touch. Anyone who considers their DNA their property should kindly not litter and keep it to themselves. What we should fight is the discrimination based on DNA analysis, because the genotype only describes some initial conditions, whereas the phenotype is what we are, and in many respects, what we've made of ourselves through culture, even in spite of our genes.
Re:Damn them! (Score:3, Interesting)
The line can only be drawn at "no expectation of DNA privacy for anyone". Each of us sheds millions of skin cells every day, everywhere we go, leaving our DNA samples on everything we touch. Anyone who considers their DNA their property should kindly not litter and keep it to themselves.
I'll be right there with you, just as soon as the laws preventing me from doing whatever I damn well please with the electromagnetic signals broadcast onto my property are repealed.
Re:Damn them! (Score:3, Interesting)
I, for one, do not care about my DNA being private. But, as you wrote, I might care about an abuse (telling me I can't live in my neighborhood because my DNA says my ancestors once lived in a certain part of the world, etc).
The most abused information -- age, race, gender -- is public. We can't keep it private (in a one-on-one personal encounter) if we wanted. The only solution is to reduce unfair treatment based on that information. Why is that not the same with DNA or other personal information (that has public health and scientific uses)?
My DNA can be used to find cures to disease, and I would provide it. I don't want to micro-manage how my DNA benefits science or is arguably mis-used. Unless you grow my DNA into a bullet and shoot it at me, it's not important to me.
Public health is important. Finding a cure for Parkinson's, alzhiemers, diabetes, autism...I really, really, really, really care about those things. If some moron arguably misuses my DNA to learn what-not I just am not interested.
Re:Damn them! (Score:3, Insightful)
Re:Damn them! (Score:2, Insightful)
Let's imagine you own a gun. Joe comes to you and says, "I want to borrow your gun for target practice". He uses it for target practice, and then uses it to rob a bank.
Hey, you can't be pissed off... he didn't say, "for target practice, and NOTHING ELSE".
Re:Damn them! (Score:5, Insightful)
If they wanted to have expansive use definitions for samples that they voluntarily surrendered, they should have had those terms in writing.
They don't need to make an explicit demand for that, that is something that is actually already assumed. One requirement for conducting research with all human subjects (and especially protected populations) is that they be made fully aware what their data is being used for prior to giving their consent (though some research models require deception and an eventual debriefing this was not the case here).
If you complete your stated analysis on a given set of samples and later desire to do further analysis, then Human Subjects ethical requirements actually put the onus on the Researchers to go back to the Participants and get their explicit permission to continue using their samples.
A major concept in Human Subjects testing is Informed Consent. Researchers are required to fully explain the nature of the study and receive full informed consent from Participants before they can collect any data. This kind of thing is something that HST Researchers (along with their professional organizations and regulatory bodies) take very very seriously.
Re:Damn them! (Score:2)
Re:Damn them! (Score:2)
If you RTFA, you'll see that they did indeed sign a consent form that was "purposely simple" (doctor's words) due to that fact that english is not the Havasupai's primary language. To "study the causes of behavioral/medical disorders." sounds like a boilerplate consent that took advantage of that fact.
What it looks like is that ASU realized they were about to have their a**es handed to them and they backed off and said "ok, we f-ed up, what can we do to make it right?"
Had a judge found in the Havasupai's favor it would have had far reaching effects throughout the US, not just in the educational system but also in the health and human services system.
Re:Damn them! (Score:2)
You mean I should assume that you will go outside our agreement at the first opportunity? If I say "I agree to let you study my blood for X condition", do you really see that as carte blanche?
Let's take this to it's logical extreme. If I get ahold of your DNA through legal means (say, from GP's mom) and set up a restaurant serving cuts of meat from your cloned body, were you "stupid and careless" to not expect such behavior?
Re:Damn them! (Score:2)
Re:Damn them! (Score:2)
Once you are above the karma threshold for mod points, it doesn't matter how your current posts are modded (unless they bring you back below the threshold). What matters is how often you access slashdot, and I think how often you post.
If you want to reduce the amount of modpoints you get... either access & post very frequently or access & post rarely.
Re:Damn them! (Score:3, Insightful)
Wow, you sure do have a great attitude towards individual rights. how 'bout I take your DNA and:
Put it into a database along with your medical history
Use it to study alcoholism or drug use
Use it to study homosexual development
Use it to study the development of our ancient ancestors from lower life forms
Put it into a national/international crime database and run it against all unsolved cases
You may not have a problem with any of these uses, but odds on if I do enough things with your DNA you will object to one of them.
Re:Damn them! (Score:2)
I would only object to the 5th use of my DNA, as it violates the 4th Amendment. The rest, have at it.
The basic tenets of your argument are sound however. I realize that while I may be quite free with my limits on DNA use, others may not. The question remains that did these people give informed consent to just diabetes or as a earlier poster claims to a broader collection of genetic disorders. Based on not RTFA, I can only speculate.
Re:Damn them! (Score:3, Insightful)
Re:Damn them! (Score:3, Insightful)
Re:Damn them! (Score:2)
If someone told you they were taking a sample from you for reason X, would you not be angry if they then used it for reasons Y and Z?
If it is "beneficial" (subjective) to you, maybe you would enjoy the "free" service of them utilizing your sample for reasons Y and Z, but if it was merely beneficial to the company that harvested the sample and you were to get no benefit from it?
I might enjoy learning that I have a pre-disposition to a disease and should avoid smoking/drinking/pooping in non-neon shades of toilet/etc. from a simple cholesterol blood test, but to you that might be something you didn't want to learn let alone a company.
It's not for us to decide what is and isn't acceptable to someone else. If the terms of the sample taking did not include the studies and other tests done I would argue it was an invasion of privacy.
Re:Damn them! (Score:3, Insightful)
You're not only missing the point, you're avoiding it entirely. Do you think researchers have the right to do research on YOU without your permission?
Re:Damn them! (Score:2)
Re:Damn them! (Score:2)
So if one day cloning becomes legal and they decide to use a leftover sample of a lab test you had done years ago, you wouldn't get upset that a company now sells copies of you for whatever reason they want? I mean, you did give those samples away in the first place. What does it matter what they do with it after that?
Or, lets get a bit more grounded. Say your blood sample that you had done years ago was now tested and it's proven that you and your family are predisposed to a whole host of diseases. Now, that information is made public or at least made available to other companies, such as insurance (health, life). Or perhaps to anyone that potentially could take health risk factors into account when approving you for something such as a loan.
Are you really going to argue that hey, I gave that stuff away years ago and now they can do what they want because I have no say now?
Re:Damn them! (Score:2)
Re:Damn them! (Score:2)
Re:Damn them! (Score:4, Insightful)
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.
Re:Damn them! (Score:3, Insightful)
Re:Damn them! (Score:2)
No, this is more like buying an iPhone and putting Android on it then seeing Steve Jobs get his panies in a bunch over it because you weren't suppose to do that with his idealistic view of the iPhone experience.
They gave away their dna with/or without implicate consent to do something, but the sample no longer belonged to them. All the other analogies I've seen have been, I'm going to ask you for something then continue to affect you by doing other things (additional charges on your credit card, additional miles on a car etc...)
i'm going to come take your dna (Score:5, Insightful)
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?
Re:i'm going to come take your dna (Score:2)
you're ignorant (Score:2)
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
Re:Damn them! (Score:3, Informative)
Collecting data for purposes A, then later using them without permission for B, C and D should be illegal. I know that is at least the case here in Norway, the law on use of personal information is quite strict. Consider it a form of fraud if you will, that's the issue here not the research itself.
Re:Damn them! (Score:2)
The tribe members gave blood samples on the condition that they be used for a specific purpose. As interesting as these secondary investigations would have been, their blood belongs to them no one else.
Re:Damn them! (Score:3, Insightful)
Dang right now dare a Native American tribe be upset when researchers don't honor the agreements they made with the tribe! They should trust that is is for their own good and will help them in the end.
Oh and they should just give up their beliefs and and got on with life.
Really have they learned nothing from history!
Actually I have to find it a little amusing that they where upset to find out the researchers didn't keep there agreement. I mean really does any tribe really expect that any agreement they sign will be honored? And just how can any researcher NOT honor an agreement with a Native American tribe and sleep at night? I mean ignoring their wishes and beliefs for their own good? Because you know better than they do? Usually I am the first to say that the concept of "white mans guilt" is stupid and abused but really in this case it seems like they must be from another planet?.
Kind of reminds me of that STNG when they are asked to relocate some Native Americans from a Planet and you can just see the character of Picard thinking, "You want me to do what???"
as soon as you break common decency (Score:5, Insightful)
you have committed the graver transgression, no matter how silly or zany someone's else's beliefs
it wounld't have hurt the researchers to simply ask the native americans permission, simply as a matter of obvious and simple due course that a kindergartener would understand the rationale for
the native americans might even have given their permission beforehand (no matter what they base their objections on after-the-fact), simply because you asked nicely
when you don't grant people simple social common decency, their positions harden and they get angry at you
a little niceness goes a long way in this world, and its a shame not enough people understand that
Re:as soon as you break common decency (Score:2, Insightful)
The DNA samples were given for an explicit purpose.
They were not SOLD. The samples are not purchased property to do with as they wish.
A PS3 on the other hand is purchased property and is it the end user's prerogative to with it what they will.
they gave their dna (Score:3, Insightful)
with the understanding it would only be used in certain ways
it's not like giving you my bike or my car. with physical objects: do whatever you want with them, who cares, the new owner is the 100% owner
but these people are giving their genetic identity to someone else. that's not like the transfer of ownership of a physical object. it's not free and clear of any continuing considerations, because the continued use of their dna has implications and meaning about how they view themselves, how they live their lives, and the way others see them
simple ethics means that whatever you do with these people's dna, you have to ask them first, forever
Re:as soon as you break common decency (Score:2)
Hardware vs. Software. Stay in school, kid.
Settlement details? (Score:2)
Re:Settlement details? (Score:2)
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
Did not follow that link due to the implied past tense (seven years ago) of the sentence lead-up to it.
Re:Settlement details? (Score:2)
This isn't a new issue... (Score:2, Informative)
Quick google search turned up http://www.dddmag.com/intellectual-property-and-biological-materials.aspx [dddmag.com] which is a summary of some of the important cases.
http://en.wikipedia.org/wiki/Moore_v._Regents [wikipedia.org] 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."
Re:This isn't a new issue... (Score:2)
Interesting... (Score:3, Insightful)
On the other hand, every time I here a "waaah, cry cry, science is being mean to my bullshit creation myths, mommy make it stop!" my blood starts to boil and I get serious about implementing a method of punching people in the face over the internet.
Yeah, of course we'll be able to do genetic research into your nasty-and-probably-heritable-disease without comparing your DNA to that of other populations, probably in ways that cast doubt on your bullshit story of having been plopped down by the gods, ready made, in the Grand Canyon... No problem at all. Also, we'll definitely not have to mention that inbreeding might have occurred, after we see those stacks of homozygous alleles. Oh, of course inbreeding would never occur in your precious (and very genetically isolated) little culture, and it hurts your feelings when we mention that the genetic evidence says that it did. Cry, cry.
Listen, fuckers, science isn't some magically wish fulfillment machine "Why yes Dr. Scientist, please use your science magic to cure my diabetes...", it's just the best method we have for learning about the world. If you don't want to know, GTFO. If you want science to solve your little problems, be prepared to learn about how the world actually is.
If the researchers went beyond the scope of their subject's informed consent, fuck them.
However, if our picturesque little tribe signed up for the research, but is just getting all touchy because they don't like the results, then fuck them. Maybe next time they can ask the mythical entities that plunked them down in the Canyon to solve their medical problems for them, if the idea of having crossed the Bering Strait is just too culturally insensitive for them...
Re:Interesting... (Score:2)
"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!'..."
So shall it ever be.
Re:Interesting... (Score:3, Insightful)
However, if our picturesque little tribe signed up for the research, but is just getting all touchy because they don't like the results, then fuck them.
About that punching people over the internet device-- I'd start with your own face. It isn't about cultural sensitivity "getting in the way of" science, nor does it even have anything at all to do with the scientific method, nor are these people challenging it, nor did they expect a "magical wish fulfillment machine" to cure their illness. This was about a very specific rule in medicine, which is do no harm.
Harm is not just physical, it can also be psychological. And in this case, by violating the terms laid out by the informed consent agreement, they did cause psychological harm. It's not for you to decide whether it's justified or not. We know tons about medicine because of WWII experiments done on unwilling subjects, and no -- I don't just mean Germany. And it hasn't just been in wartime -- any time social inequity has existed, there has been a potential (often realized) to hurt a smaller group of people to benefit a larger in the name of progress. Many advances in medicine have been looked back on with shame -- because we hurt people to get the information we have. So we learned from our mistakes and now we are very specific in what we tell patients, howe we tell them, and the specifics of the doctor-patient relationship, and all of this branches from the ethical fundamental of do no harm. That's a line that any self-respecting scientist, doctor, engineer, or decent human being doesn't cross lightly, if ever.
These researchers breached that foundation of trust. Doesn't matter why they did it. Doesn't matter what benefit there was. It's tarnished by the fact that they broke their own rules and harmed another culture doing so. That is indefensible. Let me be clear: This isn't about science or technology. This is about ethics and these people did something unethical because they thought the ends justified the means. And frankly, if science as an instutition is to survive, it needs to recognize that it is not an end unto itself, nor is it a religion, but simply and justly a tool in a box, to be picked up and used when society needs it, and put back in its box when it is no longer needed.
The idea that progress for its own sake is justified has been the source of some of the darkest chapters of human history. Do not drag an institution that has strived to learn from its past mistakes back through the mud purely to justify your own cultural intolerance.
Re:Interesting... (Score:3, Interesting)
Regarding your insistence that this was a violation of "do no harm" - I'm not buying it. I understand it's place in medical lore, but if you think it's really a useful guide, you're wrong. If "do no harm" was truly a useful rule for guiding doctors' actions, then they could never perform surgery, they could never prescribe drugs with harmful side effects, and the entire structure of medicine as we know it would cease to exist. They have to do some harm; the question is whether the harm is outweighed by the benefits. "Do no harm" sounds nice, and as a sort of generalized medical philosophy it's salutary, but it's so vague as to be useless for actually making decisions. That why, when doctors are actually looking at the ethics of their decisions, they don't ask "Did I do harm?". They look to the rules of medical ethics which have been developed through a lot of hard work by people actually dealing with real-world problems. Much as with science generally, relying on the writings of people who have been dead for thousands of years rather than your own judgement and the evidence is a terrible idea.
Re:Interesting... (Score:5, Informative)
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.
And it should have been blocked by the local Institute Review Board (IRB) who is supposed to oversee research involving samples of human tissue for this very reason (shades of Tuskege and vulnerable populations come immediately to mind). Either the researchers didn't get IRB approval, which is a career-ending mistake, or the IRB gave approval for what seems to be unethical use of the samples.
Neither of those seem likely so I'm betting there's more to the story here.
For those who are interested in understanding more about regulations concerning human research, the basis for current theory and practice is something called The Belmont Report (use Google). Also, for Federally Funded research, DHHS has specific guidelines (based on The Belmont Report recommendations): http://www.hhs.gov/ohrp/irb/irb_guidebook.htm [hhs.gov]
Re:Interesting... (Score:4, Insightful)
Just because they are scientist does not mean they are angels out to do humanity good.
Take the insurance company getting hold of your DNA. All of a sudden, the next time you go to use your benefits you find a whole list of exemptions. You have the markers for cancer X? Not Covered. Heart disease, epilepsy? Not covered. You get the idea.
If you don't think that these things will happen you only have to read about Wellpoint [slashdot.org] to see if someone cancel your coverage to make a buck. Image what they would do if they had your DNA as well. They would drop you and you would never know what they found.
nice ivory tower sentiment (Score:5, Insightful)
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
Re:nice ivory tower sentiment (Score:3, Funny)
You offend me sir! I am an astrophysicist and my science and I do operate in a vacuum!
Re:nice ivory tower sentiment (Score:3, Funny)
You offend ME sir! I am a georheologist and my science doesn't even exist below 10,000 kilopascals!
beautiful place (Score:3, Informative)
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.
Re:beautiful place (Score:3, Funny)
Dude, "reserve" might be a poor choice of diction.
Precious Bodily Fluids . . . (Score:2)
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!"
"scientific" use of police and military DNA (Score:2)
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.
Told but didn't understand..... (Score:5, Informative)
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.
Re:Told but didn't understand..... (Score:3, Insightful)
Re:Told but didn't understand..... (Score:4, Insightful)
I agree, that's tricky, but ultimately it comes down to it being done in good-faith. If this was explained to the people (which seems to be the case), and if the people seemed to understand and agree at the time (which I see no evidence against), then the researchers acted in good faith. Just because they didn't foresee certain consequences (such as their creation myth being busted) doesn't mean that they did not give informed consent.
I think that's a poor example. These people signed on for broadly defined "medical/behavioral" studies. Their main interest was the diabetes study, and if that's all they were interested in giving consent for, they should have said so.
Grad students are researchers. That's how a lot of research gets done. Who do you think would be doing this work, when it's a university who shows up at your door and says "We'd like to study your genetics"? Further, what's wrong with profiting from this research (either by gaining a degree, or monetarily)? Lets say they actually came up with a cure for diabetes during the course of the study. Are they then barred from marketing this new drug? If so, how does anyone get this treatment? Like it or not, volunteers are the basis for medical study, people profit from the results of the research, and hopefully, overall, life improves all around due to new treatments.
Live from Arizona (Score:5, Informative)
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.
Re:Live from Arizona (Score:3, Informative)
Oh and the Havasupai don't live in "the deepest part of the Grand Canyon" that would be the Supai Tribe. The Havasupai live on top and is where they charge $75 for the sky walk over the GC.
Re:Live from Arizona (Score:3, Informative)
It is probably unrelated but worth knowing, that in a village of 450 people that is 8 miles from the nearest road, they have a very nice modern diabetes clinic and exercise center.
Re:Live from Arizona (Score:3, Interesting)
Re:Live from Arizona (Score:3, Interesting)
Native tribes do not have full sovereignty. They are also not native, and they certainly didn't treat the people they displaced any nicer than the Europeans treated them.
I think we should just eliminate reservations altogether. Give the land to these people as private property, make them normal citizens, and let them live their lives.
I've solved the mystery (Score:5, Insightful)
I've been to Havasupai (which is actually in Havasu Canyon, not the Grand Canyon, but they are connected). It's known locally for it's really beautiful falls (Moody, Havasu, and Beaver). If you remember the Indian village from Next [imdb.com], that's the place.
While I was waiting to get helicoptered out (you can hike ten miles, or fly, there are no roads) after my girlfriend twisted her ankle, I got to watch for three hours as the locals flew in from their shopping trips. I do not remember a single one who was not obese. Most were morbidly obese. And the crap they were getting off the helicopter was, well, crap. They subsist on a diet of Hot Pockets [youtube.com], Cheetos, and Pepsi. They don't farm, they don't work, they do all have satellite TV, though.
Morbid obesity, a high-fructose corn syrup heavy diet, and a sedentary lifestyle are all factors for an increased rate of diabetes.
The other reservations in AZ that I've visited are primarily agrarian (with a few casinos), so for the most part, they're eating healthier foods, and they're out there performing physical labor to cultivate the food. A good diet, and plenty of exercise reduce the risk of diabetes.
Needless Drama (Score:5, Insightful)
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.
Researcher Behaving Correctly (Score:5, Informative)
Re:here comes a relativist conundrum. (Score:4, Insightful)
>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.
Re:here comes a relativist conundrum. (Score:5, Informative)
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.
Re:here comes a relativist conundrum. (Score:2)
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?
Re:LOL (Score:4, Insightful)
Since I'm from the Northern Great Plains, American Indian and a Great Plains Indian Wars historian just wanted you to know that it wasn't a genocide.
The Indian Wars were a low intensity conflict between small US Army units and small warrior bands.
90% of the American Indian population on the Great Plains were not killed, in fact only 8-9,000 American Indians died in the Great Plains from 1850-1900.
So the fact remains, the Federal Government is pushing a religion in BIA funded schools.
Re:here comes a relativist conundrum. (Score:3, Informative)
"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 [tri-cityherald.com]
In the waning days of the Clinton administration the site destroyed. Ultimately the scientists won in Federal Court and the remains were not suppressed.
Re:here comes a relativist conundrum. (Score:2)
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.
Re:here comes a relativist conundrum. (Score:2)
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.
Re:here comes a relativist conundrum. (Score:2)
Re:here comes a relativist conundrum. (Score:2, Funny)
Re:here comes a relativist conundrum. (Score:2)
Though it's also good to remember that there's slightly silly bullshit and then there's actually harmful bullshit.
Re:Get it Back (Score:5, Informative)
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.
Re:Get it Back (Score:3, Insightful)
Re:Get it Back (Score:3, Informative)
Re:Get it Back (Score:3, Interesting)
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.
Re:Get it Back (Score:2)
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?
Re:Get it Back (Score:5, Insightful)
I'll say the same thing here that has occurred to me with several other decisions. It's amazing to me that there could be any controversy over this or otherwise a widespread view that there is any other way to handle it.
Remove the "genetics" aspect from the issue; let's imagine that the tribe consented to have the researchers take photographs to study, say, body morphology, or whatever. The researchers then use those photographs to also analyze facial morphology.
Should the research subjects be able to control in perpetuity how those photographs can be looked at and thought about? Should they be able to control what tools are used to examine the photographs? (i.e. eyes only, no lenses or calipers...not even eyeglasses) Or can the researcher analyze those photos as they see fit and draw whatever conclusions they wish?
Both a photograph and a DNA sample are snapshots of some aspect of a person's individuality. Both yield medical data. Both can be used to track and uniquely identify a person (except for twins). We're just far more comfortable with the concept of photographs.
If this case were about photographs, would the Slashdot crowd react in the same way, or would we dismiss the tribe as backwards aboriginals afraid of losing their soul? Informed consent is a very good policy, but does our discomfort stem from the breach of policy or the genetic bogeyman?
Re:Get it Back (Score:4, Insightful)
Should the research subjects be able to control in perpetuity how those photographs can be looked at and thought about? Should they be able to control what tools are used to examine the photographs? (i.e. eyes only, no lenses or calipers...not even eyeglasses) Or can the researcher analyze those photos as they see fit and draw whatever conclusions they wish?
That should all depend on the consent form signed, shouldn't it? If individuals want to release their data for only a certain kind of study, whether that's DNA, photographs, or shopping history, and reasears decide to do something else with that data - well, what does the consent form / privacy policy say? It's a contract, like any other (and like any other, if you misrepresent a written agreement to someone who can't understand its implications, the statements you make and not the written form becomes the contract).
Re:Get it Back (Score:5, Insightful)
I would say its no different if its a photograph. A key component of performing valid and recognized research is informed consent. I absolutely expect to control in perpetuity how my photograph / dna / etc are researched. I'm not as concerned with the tools, whether its a magnifying lens or a digital something or other; but what's being searched for is separate.
The fact that you had to use the word "also" as in "also analyze facial morphology" illustrates the line very clearly. I/you/we/whomever didn't consent to that; we consented to body morphology. If you want to analyze it for that come back and get my consent or piss off.
Why do I hold this control? because its my information to start with. I gave you access to it in return for something under some contractual terms.. Now you are trying to change them after the fact without my option or giving me anything in return. More importantly, you are trying to do something I likely would never have agreed to in the first place.
Here's a better example, instead of a photo, let's pretend its my credit card. If I go to the store and buy a widget from you and pay with my credit card, I consent to give you the credit card briefly for the sole purpose of executing this transaction. You are not entitled to copy my number, to run background checks on me, to withhold it from me, to give it to others, or to charge other things to me. I gave it to you to execute a transaction that's it.
So to answer your question I would react that exact same way. I view it no differently than fraud / misrepresentation and potentially breech of contract.
To answer a separate question; the researchers are free to draw whatever conclusions they want no matter what. Whether they are valid conclusions, or have any evidence to substantiate the claim is another story. They are free to analyze these photos in a manner which is consistent solely with advancing the purported goals and activities that are consistent with disclosure, studying for trends that are wholly unrelated to the study at hand which was disclosed does not meet this requirement.
Think about this in the reverse case. Go buy a playstation3 or an iphone, shouldn't it be yours to do with it what you will? Or does Sony/Apple have a right in perpetuity to change the conditions and terms, add and remove functionality as they see fit at any time whenever they like without your consent. Doesn't seem very different to me. You want my data you play by our rules. I'm not giving you my blood, i'm giving you a license to analyze it. Come to think of it more ironically Apple does exactly this in regards to tools now. Apple software "can only be run on apple branded computers" and iphone software can only be written in "approved languages".
Funny, its always important that IP, copyrights, contractual, and privacy rights of corporations is always protected so sternly, but so quickly trampled when they are of an individual, the ones who are actually supposed to be protected by laws.
Re:Get it Back (Score:3, Insightful)
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.
Re:How sad (Score:2)