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After DNA Misuse, Researchers Banished From Havasupai Reservation

timothy posted more than 4 years ago | from the while-the-rivers-run-clear dept.

Privacy 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.'"

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Get it Back (0)

Anonymous Coward | more than 4 years ago | (#31943298)

They should make them give the DNA back !

Re:Get it Back (5, Informative)

gront (594175) | more than 4 years ago | (#31943604)

Read TFA

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 (2, Insightful)

keithjr (1091829) | more than 4 years ago | (#31943942)

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?

Re:Get it Back (1)

causality (777677) | more than 4 years ago | (#31943978)

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

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?

America needs DNA (0, Troll)

For a Free Internet (1594621) | more than 4 years ago | (#31943328)

DNA is American and we invented it. RNA is the cheap Italian substitute that is ruining our market, because those sneaky Italian counterfeiters are trying to undermine our cells and their American meatabolic processes.

Damn them! (2, Insightful)

maugle (1369813) | more than 4 years ago | (#31943356)

Those damn researchers, trying to study other diseases and discover our true heritage! How dare they?!

Re:Damn them! (3, Insightful)

Anonymous Coward | more than 4 years ago | (#31943432)

Well, even if their intentions were good, the samples were provided for a different purpose.

Re:Damn them! (2, Insightful)

spamking (967666) | more than 4 years ago | (#31943442)

Exactly. They just opened the flood gates for the rest of US Tribes . . . expect more complaints to be filed.

Also mades it harder for legitimate research (4, Informative)

pavon (30274) | more than 4 years ago | (#31943948)

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! (4, Insightful)

Kelbin (1787356) | more than 4 years ago | (#31943460)

Really? The Researchers were given the DNA for the sole purpose of researching the Tribes troubles with Diabetes and then they started doing other things with that DNA that goes outside of what the samples were given for.

Re:Damn them! (3, Insightful)

MillionthMonkey (240664) | more than 4 years ago | (#31943918)

Like figuring out whether the diabetes is comorbid with other mental illnesses that might be treatable? Or related to health problems seen among other groups too that may be dealing with them more or maybe less successively than people in the Tribes?

Re:Damn them! (5, Informative)

NiteShaed (315799) | more than 4 years ago | (#31944020)

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! (2, Insightful)

eldavojohn (898314) | more than 4 years ago | (#31943470)

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! (-1, Flamebait)

ElectricTurtle (1171201) | more than 4 years ago | (#31943686)

If I gave a DNA sample to somebody (like your mom last night) without making them sign some sort of agreement as to how that sample was to be used, what expectation would I reasonably have that the use would be exclusive? Did these researchers obligate themselves verbally to an exclusive use? Just saying 'we will use these for x' is not exclusive by itself. Unless the researchers said 'we will use these for x and nothing else ' then these whiners have no ground to stand on, except being stupid and careless.

(The 'your mom' joke was just low hanging fruit to the subject, and I would have used it in my reply to anybody. It is not intended as a personal provocation.)

Re:Damn them! (1, Insightful)

sconeu (64226) | more than 4 years ago | (#31943750)

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! (-1, Flamebait)

ElectricTurtle (1171201) | more than 4 years ago | (#31943868)

Yeah, but you're assuming I'm dumb enough to let somebody borrow one of my guns. Like hell I would. These people did something dumb, and now they're complaining about it. If they wanted to have expansive use definitions for samples that they voluntarily surrendered, they should have had those terms in writing. Then if this had still happened, they could sue. The end.

Re:Damn them! (4, Insightful)

tophermeyer (1573841) | more than 4 years ago | (#31944052)

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! (1)

ElectricTurtle (1171201) | more than 4 years ago | (#31944226)

This depends on their status. Yes, there is Title 45 Part 46 of the CFR, but that only applies to federally-regulated research. Whether this falls into that category or not I am not informed enough to say. Other organizational policy issues are of course between the researchers and their organization.

Re:Damn them! (0, Troll)

Nerdposeur (910128) | more than 4 years ago | (#31943782)

So if I say "may I borrow your car to go to the grocery store?" and we don't sign an agreement saying "and nowhere else," then it's OK for me to take a cross-country road trip? Your fault, eh?

Also, after that, you and your neighbors would continue to trust me, right?

(Slashdotters, take note: I used a car analogy.)

Re:Damn them! (-1, Flamebait)

ElectricTurtle (1171201) | more than 4 years ago | (#31943988)

I have never lent somebody a car in my life, because with rare exceptions that would be an extremely dumb and irresponsible thing to do. Just like what these people did. They gave over samples apparently with no written guaranty of how they would be used, and now they're stunned that they have been used for other things. No shit.

Somebody could get drunk in my car and kill somebody. That's why I would only lend a car to somebody I knew fairly intimately, whose behavior I could predict based on precedents, which would mitigate my fears over the financial and/or criminal liability I would inherit by volunteering my property for another person's use. Like I said, never done it, probably won't for anybody not related by blood. It's called taking responsibility. These people didn't, now they're bitching like it's the researchers' fault that they never required them to agree to any terms before releasing the samples. Absurd.

Re:Damn them! (1)

Em Emalb (452530) | more than 4 years ago | (#31944010)

(Slashdotters, take note: I used a car analogy.)

Dude, thanks for the assist. My work is done here.

Re:Damn them! (1)

fwfell (991250) | more than 4 years ago | (#31943946)

Despite your disclaimer, your "mom" joke and the tenor of your reply reveal much about your ability to be civil.

Re:Damn them! (1)

ElectricTurtle (1171201) | more than 4 years ago | (#31944134)

My excellent karma disagrees. I actually drop edgy posts now and then specifically so I don't get flooded with more mod points than I really want.

Re:Damn them! (1)

Discopete (316823) | more than 4 years ago | (#31944138)

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! (1)

tsm_sf (545316) | more than 4 years ago | (#31944180)

what expectation would I reasonably have that the use would be exclusive?

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! (0)

Anonymous Coward | more than 4 years ago | (#31944078)

I'd draw the line at giving the results to the FBI, which it sound like they did not do.

I seem to recall a TV special about the DNA collections to trace the migration of man from Asia to the US. I'm not sure if this tribe was one of them. Some tribes were quite hesitant, until convinced by other members that learning was in keeping with the tribes' culture. Furthermore, if they had blood brothers elsewhere, it would not be against their heritage to learn where their blood brothers lived.

As to going against tribal history, I guess it's a bit like GWB not wanting to hear Valerie Plame's info that there was no nuclear weapons program in Iraq. Remember, we had to invade because they would have a nuclear bomb, "within two years."

Re:Damn them! (3, Insightful)

Anonymous Coward | more than 4 years ago | (#31943488)

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! (1)

mrdoogee (1179081) | more than 4 years ago | (#31944234)

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! (2, Insightful)

Mordok-DestroyerOfWo (1000167) | more than 4 years ago | (#31943520)

It's a tricky situation. I'd love to agree with you in that gaining knowledge is extremely important. But ethically they should have at least asked for permission first. The problem now is that other tribes may be more reluctant to give samples for any reason lest they be abused.

Re:Damn them! (1)

rotide (1015173) | more than 4 years ago | (#31943550)

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! (2, Insightful)

mcgrew (92797) | more than 4 years ago | (#31943578)

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! (1)

Hijacked Public (999535) | more than 4 years ago | (#31943656)

They didn't do research on them, they did research on their DNA, which the Havasupais provided willingly. Why is it all right for an individual to put usage terms on something they give away but not all right for a company to do it with a product they sell?

Re:Damn them! (1)

rotide (1015173) | more than 4 years ago | (#31943746)

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! (1)

Hijacked Public (999535) | more than 4 years ago | (#31943896)

I am not arguing anything any way. I'm asking, why is it all right for a person to set terms for DNA they've given away, but not all right for a company to set terms for a product it sells?

Re:Damn them! (1)

AshtangiMan (684031) | more than 4 years ago | (#31943994)

The terms in the DNA case were set by the scope of the study which was presented by the researchers and was the foundation of the agreement. Likewise, when you buy the product you know what the limitations are. Neither is a problem. When the company changes the limitations on the product (PS3, made more restrictive for instance) or the scope is expanded after the fact, without obtaining authorization then both are a problem. You see?

Re:Damn them! (3, Insightful)

thruthenight (1765910) | more than 4 years ago | (#31943636)

What about this: you give your credit card number to a store for certain purchase, and they purchase dozen of other things on the same credit card for you ("Yes, sir, we truly believe you need all those things, it's all for your own good!")

Re:Damn them! (1)

ArsonSmith (13997) | more than 4 years ago | (#31944088)

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...)

Damn liars everywhere, damn them! (0)

Anonymous Coward | more than 4 years ago | (#31943646)

How dare they lie indeed, sue their lying asses, sue.

i'm going to come take your dna (4, Insightful)

circletimessquare (444983) | more than 4 years ago | (#31943652)

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 (1)

ElectricTurtle (1171201) | more than 4 years ago | (#31944036)

Did I give you the DNA voluntarily without any written terms to limit its use? Then I guess I'm not going to object, because that would only highlight what an irresponsible idiot I am, and how I'm willing to shift that blame for how irresponsible I am on to other people.

Re:Damn them! (2, Informative)

Kjella (173770) | more than 4 years ago | (#31943804)

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! (0)

Anonymous Coward | more than 4 years ago | (#31944170)

"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.”"

Re:Damn them! (0)

Anonymous Coward | more than 4 years ago | (#31944026)

Yes, those damn researchers! I'm sure that with a flip of a switch, that data could be abused and would be if any white person of wealth and stature wanted something from them. Nobody with money on their minds gives a **** about the Native Americans. Their only recourse is total xenophobia until respect comes before ambition. Scientists have no more ethics than robber barons.

Re:Damn them! (1)

operagost (62405) | more than 4 years ago | (#31944100)

Worst. Troll. Ever.

as soon as you break common decency (5, Insightful)

circletimessquare (444983) | more than 4 years ago | (#31943404)

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 (0)

Anonymous Coward | more than 4 years ago | (#31943498)

Wait, just a minute ago, in the Sony PS3 story, I was told that once I have something it is mine to do with as I wish.

These people gave their DNA to researchers. Why isn't it now up to the researchers what they do with it?

Re:as soon as you break common decency (2, Insightful)

Anonymous Coward | more than 4 years ago | (#31943684)

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 (2, Insightful)

circletimessquare (444983) | more than 4 years ago | (#31943718)

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 (1)

FatSean (18753) | more than 4 years ago | (#31943720)

Hardware vs. Software. Stay in school, kid.

Re:as soon as you break common decency (0)

Anonymous Coward | more than 4 years ago | (#31943980)

Wait, just a minute ago, in the Sony PS3 story, I was told that once I have something it is mine to do with as I wish.

These people gave their DNA to researchers. Why isn't it now up to the researchers what they do with it?

I like your logic.

Invite me over to your house for dinner sometime (if your mom doesn't mind). One I have permission to go on your property, I can do with it as I wish. Short list includes:

a. Drinking all of your liquor
b. Replacing your desktop wallpaper with Mr. Goatse
c. Feeding your dog chocolate and Redbull.

Because, clearly, when you give something to someone you are giving them a free pass to do with it as they wish.

Oh wait, damn it. I was in the middle of trolling you, but now I kind of see your point.

In the Sony case, the individual wants their property rights to be firm
In the Havasupai case, the individual wants their privacy to be firm

If the Havasupai consider their dna samples to be their property, then the question is "What reasonable expectation to privacy should one have"? We don't want, for example, Google to have free reign of our e-mails, even if they are hosted on their servers. We consider our e-mails to be our private property.

If the researchers consider that the dna samples are their property, then the question is "What are the limitations of law in regards to property rights and this case?" If they gave up their dna samples, if it is legal to dig through dna samples to do research, then I don't see the problem.

So, in lieu of going back to trollin', yeah. It's a complicated issue. I hope everyone else thinks critically about your comment, it is surprisingly profound.

Re:as soon as you break common decency (1)

vikingpower (768921) | more than 4 years ago | (#31943694)

Very true. Well said.

Settlement details? (1)

jDeepbeep (913892) | more than 4 years ago | (#31943410)

There seems to be a shortage of actual details on the settlement. Bueller? Bueller?

Re:Settlement details? (1)

jDeepbeep (913892) | more than 4 years ago | (#31943570)

Never mind. This was in the NYT blurb.

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? (1)

elrous0 (869638) | more than 4 years ago | (#31944212)

Wow, $700,000 will buy a lot of firewater.

here comes a relativist conundrum. (0, Troll)

gandhi_2 (1108023) | more than 4 years ago | (#31943416)

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?

Re:here comes a relativist conundrum. (4, Insightful)

gyrogeerloose (849181) | more than 4 years ago | (#31943546)

>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. (5, Informative)

Wyatt Earp (1029) | more than 4 years ago | (#31943688)

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.

LOL (1, Flamebait)

FatSean (18753) | more than 4 years ago | (#31943770)

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.

Re:LOL (4, Insightful)

Wyatt Earp (1029) | more than 4 years ago | (#31944044)

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. (1)

sznupi (719324) | more than 4 years ago | (#31944194)

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:here comes a relativist conundrum. (1)

Wyatt Earp (1029) | more than 4 years ago | (#31943730)

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 [wikipedia.org]

Re:here comes a relativist conundrum. (1)

gyrogeerloose (849181) | more than 4 years ago | (#31943912)

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?

Re:here comes a relativist conundrum. (3, Informative)

Wyatt Earp (1029) | more than 4 years ago | (#31944132)

"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. (1)

99BottlesOfBeerInMyF (813746) | more than 4 years ago | (#31943630)

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. (1)

Trepidity (597) | more than 4 years ago | (#31943678)

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. (0)

Anonymous Coward | more than 4 years ago | (#31943760)

Well.. perhaps that is because Christianity has a poor record for decrying science as wrong. Perhaps because Christianity has made some non-trivial effort at telling non-christians that christianity is the way.

The Havasupai, by contrast, are merely pissed off that some academic douchebags couldn't actually be bothered to ask permission for research beyond the scope of the original agreement.

I don't even know what the Havasupai belief of the origin of their tribe? race? all people? actually is. So they're quite a bit less intrusive than Christians.

Re:here comes a relativist conundrum. (1)

ElectricTurtle (1171201) | more than 4 years ago | (#31943826)

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!

Re:here comes a relativist conundrum. (2, Funny)

gotpoetry (1185519) | more than 4 years ago | (#31944072)

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!

Re:here comes a relativist conundrum. (1)

sznupi (719324) | more than 4 years ago | (#31944080)

Though it's also good to remember that there's slightly silly bullshit and then there's actually harmful bullshit.

This isn't a new issue... (2, Informative)

gront (594175) | more than 4 years ago | (#31943504)

The IP rights and ownership of biological materials has been an important intellectual property issue for quite a while. Who owns or should commercially benefit from cell lines and tissue samples has been litigated several times.

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... (1)

Intron (870560) | more than 4 years ago | (#31943910)

What's really troubling about Moore v. Regents is the undisclosed conflict of interest. It was in the physicians' interests to remove his spleen and draw samples because they kept and profited from the cells. If Moore had gone to a different doctor who was just providing him with treatment and not doing research would he have received the same care?

Where Was The Arizona State University (0)

Anonymous Coward | more than 4 years ago | (#31943510)

Institutional Review Board on subject consent?

Yours In Ishfahan,
Nick Halflinger

WO-WO-WO! (0)

Anonymous Coward | more than 4 years ago | (#31943544)

Scalp the palefaces!

How sad (1)

vikingpower (768921) | more than 4 years ago | (#31943556)

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 ?

Interesting... (3, Insightful)

fuzzyfuzzyfungus (1223518) | more than 4 years ago | (#31943574)

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...

Re:Interesting... (-1, Troll)

Anonymous Coward | more than 4 years ago | (#31943752)

After you invaded their land and murdered their people? You guys are pathetic. You abused native americans since the founding of your exploitive nation.

Show a little respect, you guys murdered these people.

Re:Interesting... (0)

Anonymous Coward | more than 4 years ago | (#31944016)

Look, everybody murdered everybody a long time ago. Yet we're still alive. Now please, don't resort to such arguments to justify everything that has to do with Indians.

Re:Interesting... (0)

Anonymous Coward | more than 4 years ago | (#31944228)

But you guys keep doing it. Learn from your mistakes.

Re:Interesting... (1)

dcollins (135727) | more than 4 years ago | (#31943772)

"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... (0)

bluefoxlucid (723572) | more than 4 years ago | (#31943848)

Inbreeding did NOT occur; my cousin was on the pill and we used condoms anyway. I play the game pretty safe, no harm no foul.

Re:Interesting... (3, Insightful)

girlintraining (1395911) | more than 4 years ago | (#31943996)

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... (4, Informative)

pz (113803) | more than 4 years ago | (#31944058)

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... (3, Insightful)

Herkum01 (592704) | more than 4 years ago | (#31944096)

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 (4, Insightful)

circletimessquare (444983) | more than 4 years ago | (#31944154)

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:Interesting... (0)

Anonymous Coward | more than 4 years ago | (#31944166)

Show a little respect for their fucking culture, asshole.

Chances are they got their diabetes from eating our HFCS anyhow.

beautiful place (2, Informative)

stoolpigeon (454276) | more than 4 years ago | (#31943576)

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 (0)

Anonymous Coward | more than 4 years ago | (#31943762)

Totally. Just be careful of the people requesting a blood sample who say "We are from the university and are here to help."

Precious Bodily Fluids . . . (1)

PolygamousRanchKid (1290638) | more than 4 years ago | (#31943660)

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 (1)

peter303 (12292) | more than 4 years ago | (#31943668)

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.

Good Precedent (1)

whogben (919335) | more than 4 years ago | (#31943738)

Even though there was little harm to the Havasupai here this case sets a critically important precedent for the future.

IRBs ???? (1, Informative)

Anonymous Coward | more than 4 years ago | (#31943792)

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.

traditional stories? umm. (0)

Anonymous Coward | more than 4 years ago | (#31943808)

Just a tangent story here. A few years ago my family went to Grand Canyon NP, and one of the things we did was to go to a ranger talk (the kind in the rustic wooden amphitheaters), where the ranger was of Native American background. I believe her tribal territory was from just east of the Grand Canyon, but I'm not too sure about that now. Either way, they were closely linked to the Grand Canyon.

Well, the story that she told was this: their cultural tradition holds that Grand Canyon formed 200 years ago.

Not to poke holes, but if your origin story involves a cataclysmic event that can be disproved in recent recorded history, why not just say that it was formed yesterday? I found this pretty odd to believe in. Only slightly less crazy than a 6000 year old Earth.

Told but didn't understand..... (5, Informative)

NiteShaed (315799) | more than 4 years ago | (#31943836)

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.

Live from Arizona (4, Informative)

arizwebfoot (1228544) | more than 4 years ago | (#31943858)

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 (2, Informative)

arizwebfoot (1228544) | more than 4 years ago | (#31943894)

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 (2, Interesting)

AshtangiMan (684031) | more than 4 years ago | (#31944230)

As for the first point regarding air-space, perhaps you should put yourself in their shoes for a minute. You are part of a sovereign nation, and some dudes come in over sea and take over, relegating you to a small patch of land. Eventually these conquerors (after killing most of your kind) grant you sovereign rights once again. It is up to Germany to determine what happens over German airspace, right? It is up to the FAA to determine what happens over USA airspace, still right? Now, the tribes have mineral rights over their lands, what is so absurd about them claiming the airspace above as well? Just because the FAA tells them? Who are the FAA to dictate rules to a sovereign entity? The arrogance is astounding. All people bend the laws to their own will, or at least anyone with the power to do so does. Sounds to me like you are a bit jaded with regards to the Havasupai . . .

I wish native americans would assassinate.. (-1, Troll)

Anonymous Coward | more than 4 years ago | (#31943870)

Every single white man in north america and take their country back from the greedy white men and european bankers who stole their country from them. Lets hope the native americans get their own nuclear program.

I've solved the mystery (5, Insightful)

kwiqsilver (585008) | more than 4 years ago | (#31944158)

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.

make them a bona fide offer. (0, Troll)

SpeedyG5 (762403) | more than 4 years ago | (#31944172)

I am sure they will trade their dna for a handful of beads.
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