Genetic material and informed consent

April 22, 2010 11:01 AM

The Havasupai Tribe of Grand Canyon won a $700,000 settlement from Arizona State University, plus the return of remaining blood samples, regarding the use of members' blood and DNA for research. The Havasupai had originally contacted researchers at ASU concerning the Type II diabetes that has ravaged that tribe and others, particularly in the Southwest.

According to the tribe, researchers used members' blood outside the scope of the initial agreement, including research on mental illness and the tribe's historic origin and geographic movement.

This last is problematic because researchers' conclusions are in direct conflict with the tribe's own myth of origin.

The tribe was represented free of charge by Stephen F. Hanlon of Holland and Knight.

Hanlon, who has a strong background in civil rights litigation, also represented the Rosewood survivors in the 1993 claims bill before the Florida legislature.

Related; related

posted by toodleydoodley (96 comments total)

Bravo. Native people are not specimens of anything.
posted by fourcheesemac at 11:15 AM on April 22, 2010 [7 favorites]

Take that science!!
posted by BobbyDigital at 11:20 AM on April 22, 2010

Reminds me of the HeLa argument.

I know that when mapping DNA and doing research that once you have a sample, you'd like to do as much referencing and cross-referencing as possible.

On one hand, if other's benefit monetarily, if you're poor, you'd like to be cut-in on the dough. On the other hand, it may be years before someone makes money on their discovery and if your genetic material is but a small part of that discovery, really, what exactly did you do?

As for the part where science disproves myth, well, that's the aim of science.

I kind of see where the tribe is coming from, but then again, I don't.
posted by Ruthless Bunny at 11:20 AM on April 22, 2010 [3 favorites]

“I’m not against scientific research,” said Carletta Tilousi, 39, a member of the Havasupai tribal council. “I just want it to be done right. They used our blood for all these studies, people got degrees and grants, and they never asked our permission.”

It's always interesting to see people trying to frame the issue around the creation belief tradition and the oh-so-altruistic science, and not, you know, violating people's rights to control over their bodies or the profit motives involved.
posted by yeloson at 11:22 AM on April 22, 2010 [7 favorites]

This is why researchers need to keep it on the straight and narrow with the human subjects stuff.

So that gobsmackingly stupid reasons for halting good research, based on a worldview that has a major problem with reality, get addressed ahead of time, not after the fact.
posted by gurple at 11:23 AM on April 22, 2010 [4 favorites]

Yeah, if origin myths become a substantial roadblock to science, we're all doomed...

However, that's mostly irrelevant to this case.
posted by klanawa at 11:24 AM on April 22, 2010

Reminds me of the HeLa argument.

Except that Lacks didn't provide informed consent for the use of her biological material, whereas the Havasupai apparently did. The argument seems to be that either they did not understand what they were consenting to or that they were deceived as to what they were consenting to.

Native people are not specimens of anything.

But when they formally consent to the collection of biological samples from their persons, those samples are samples, are they not? I don't think anyone would argue that the people themselves are "samples". The samples in question are vials of blood stored in a freezer and collected with the informed consent of the research subjects, under a procedure approved by an institutional review board and regulated on the federal level.
posted by mr_roboto at 11:25 AM on April 22, 2010

I just wanted to say, that if anyone finds themselves thinking about visiting the grand canyon, I recommend going to this reservation instead of the main touristy area. It is amazing.
posted by inigo2 at 11:25 AM on April 22, 2010

This last is problematic because researchers' conclusions are in direct conflict with the tribe's own myth of origin.

Seriously?

We laugh and point when Arkansas tries to outlaw evolution because of their myth of origin, but we're supposed to cheer when a bunch of Havasupai get upset because science disagrees with their myth of origin? How about no?

fourcheesemac Nonsense. Everyone is a specimen. The First People don't get an exception to that just because my ancestors seriously fucked them over.

You give your blood to scientists, they're going to do science on it.

For that matter, even as a layman, I can easily see how studies of tribal movement can be directly related to diabetes. If the Havasupai are pulling a Ken Ham style "ZOMG EVOLUTION CONFLICTS WITH MY MYTH!!!!" then screw 'em. I've got no patience whatsoever for superstition standing in the way of science, doesn't matter if the superstition is coming from Christians or First People, it's all superstition and it's impact on the world should be identical: none.
posted by sotonohito at 11:25 AM on April 22, 2010 [9 favorites]

Native people are not specimens of anything.

Wow, what a horrifically reductive overstatement. No one is saying "Native People are specimens." The issue is what the university can use their blood & DNA for after giving it over to a university. And more broadly, whether anyone's is.

The fact of the matter is that specimens and cell lines quite often travel through different universities, different experiments, are manipulated, changed and analyzed. Do you think that after donating a unique form of cancer cells to a university, one should be able to object to research that offends the donor's religious sensibilities?

I think absolutely not, but its far from black and white.

E.g., from the article:

"The question is, how far do you have to go? Do you have to create some massive database of people’s wishes for their DNA specimens?"

(good post)
posted by ScotchRox at 11:27 AM on April 22, 2010 [1 favorite]

I think their problem with the origin myth thing was that they were concerned it would be used against them to have their land taken away. If they weren't "from" there after all, what right had they to the land? I think after 500 years of history the Native Americans have been through, this is a very rational and understandable concern. I think other people and cultures that have had a lot of movement are OK with the idea of "first we were from there, but now we are from here" but that's a concept that it seems they don't have. And why should they trust or believe anything anyone tells them?
posted by amethysts at 11:30 AM on April 22, 2010 [11 favorites]

Yeah, this isn't like horrible Science Vampires crept in during the night and stole blood from them for nefarious deeds... The article actually makes it sound like the tribe actually petitioned the lab for blood analysis to find out info regarding their diabetes incidences, and the lab said "Sure, can we check some other stuff too?" whereupon permission to cross-analyze was supposedly given. Then, when lots of extra information is provided, the tribe gets all 'fuck you, where's the money you owe us for.... whatever?'

They claim that the blood was the basis for research, which got the scientists grants and such, and so they are owed a slice - it almost sounds like they're under the impression that the grants are a prize for providing a nifty product that was stolen from the tribe, as opposed to the very money that made the studies possible to fund and perform.
posted by FatherDagon at 11:33 AM on April 22, 2010 [3 favorites]

I'm not seeing where it was really explained that research on other stuff would be done.
It should have been explained that science is a crap shoot, they might not find out anything useful and they might find out stuff they don't want to hear. Were the researchers supposed to know that they had to tell them that? I don't know. I'm sympathetic to the tribe. They didn't know what they were getting into.
“Did you have permission,” she asked during the question period, “to use Havasupai blood for your research?”
If they did sign a release that permitted it, the answer would have been a simple "yes", no problem. But if they didn't sign a release that permitted it, they should have went back and got a new release.
posted by amethysts at 11:38 AM on April 22, 2010

For a little perspective, and help on the tl;dr front:

- the tribe is ~650 members
- they live at the bottom of the Grand Canyon, which is eight miles from the top of the Grand Canyon
- transport in and out is: on foot, on horseback, by helicopter
- English is a second language for the Havasupai and educational attainment is not high

the tribe were looking for a way to deal with the diabetes that was killing/disabling so many members and causing them to have to leave the canyon for dialysys/hospitalization. it is unlikely they fully understood some of the broad consent forms they signed.
posted by toodleydoodley at 11:42 AM on April 22, 2010 [4 favorites]

dialysis, dammit.
posted by toodleydoodley at 11:42 AM on April 22, 2010

Speaking as someone who does a lot of human subjects research, the issue with the origin myth is almost certainly one of informed consent.

You're totally allowed to do research whose results might conflict in its results with your subjects' religion. You're totally allowed to do research with political or social consequences. But you have to tell your subjects that that's what you're up to.

If they'd gone to the Havasupai, said up-front "We want to take the DNA samples you gave us and use them to study your prehistoric origins," and gotten consent, it would have been completely kosher from an IRB point of view. But it sounds like they didn't do that — or didn't document it properly if they did. And that's a huge problem, the same way any failure to get informed consent is a huge problem.
posted by nebulawindphone at 11:46 AM on April 22, 2010 [8 favorites]

One of the main concerns of the tribe was, why did this horrible epidemic of diabetes start in the 1960s? It was bad enough that dozens of tribe members were getting their limbs amputated. That was why they wanted the research in the first place. But at the end of the NYT article it says:

Many members are still suffering from diabetes and say they were never told if researchers had learned anything that could help them.

If I were Havasupai, that would piss me off. I can understand why Marko et al. would want to use the DNA to research other things, but that shouldn't make them lose track of their stated original goal.
posted by suburbanbeatnik at 11:48 AM on April 22, 2010 [4 favorites]

The problem here is not simply "those crazy religious types, hatin' on mah SCIENCE." it's "after several centuries of horrific exploitation, violence, slavery, etc., it would behoove the (mostly non-Native, I presume) researchers to be completely straightforward and clear with native peoples they wish to study, so as not to appear to be yet another exploiter."

And Lacks' family was also not treated well, in terms of lack of information regarding what was being done with her cells, and lack of respect, period.

It wasn't illegal, her cells were valuable to science, but that doesn't make it ethical.
posted by emjaybee at 11:55 AM on April 22, 2010 [5 favorites]

While I come down firmly on the side of "science" in the matter of Kennewick Man, the use of this DNA for investigations for which there was no prior agreement is troubling.
posted by Danf at 12:03 PM on April 22, 2010 [2 favorites]

If the agreement was Type II diabetes research, then end the research at any point outside of that. Passing around someone else's DNA like a list of stolen credit card numbers on some .ru-hosted blackhat forum for whatever purposes please you is simply not okay with me. If Pathology looks at my biopsy to see what kind of cancer I may have, grand. Y'all charged me for that, somewhere in the bill. Establishing a line of my tricksy immortal cells for research is out of scope.

Unfortunately, their agreement was to "study the causes of behavioral/medical disorders," which could cover just about anything, if you stretched it enough. The whole "simplified English" deal seems a little condescending. Some kind of subject advocacy was needed and did not happen.
posted by adipocere at 12:08 PM on April 22, 2010 [3 favorites]

For what it's worth, too, academia is much less caveat empetor about this shit than mainstream American culture.

Mainstream America takes it for granted that the person signing a contract or a waiver is responsible for understanding it. We figure a guy who signs a form he can't read, or one he doesn't understand, is a sucker who deserves whatever he gets. He shoulda read more closely; he shoulda hired a lawyer; he shoulda done his homework; etc. etc. etc.

But that's not how informed consent works. It's on the researcher to make reasonably certain that his subjects really and truly understand what's going on. There does come a point where you've done your due diligence in making things clear to your subjects. Any truly unforeseeable misunderstandings that come up after that point aren't your problem. But as I understand it, that point comes much, much later than it would in contract law. Burying something important in fine print, or glossing over possible problems could arise, is flat out illegal if you do it on an IRB consent form, whereas it's standard operating procedure in, say, credit card contracts.

This is because informed consent does not, and should not, work adversarially. There is no room for "shoulda hired a lawyer" — the whole point of the enterprise is to make sure that subjects are empowered to make good decisions for themselves, without needing a lawyer.
posted by nebulawindphone at 12:10 PM on April 22, 2010 [15 favorites]

with a cultural history of manifest destiny and the trail of tears, this isn't just an issue of science vs religion.

17 years ago i went to the grand canyon for the first time and i was struck dumb by the beauty and the stillness and the clean air. it was maybe one of the only times my brain felt still as a teenager. i also remember the moment i realized that certain groups of the first peoples are one of the few groups who exist in museums the same way they exist in every day life. normally we slide by glass covered cases, researching people from centuries past - but when the natives, and with this tribe in particular, we're trying to get them in a history book and they're just trying to protect their family and their way of life. when those interests pull against each other, in that specific case when science comes up against religion, science should probably just go find their interests elsewhere.
posted by nadawi at 12:11 PM on April 22, 2010 [2 favorites]

The consent form in this case, which was intentionally written in very simple English, because many of the Havasupai have English as a second language, reminds me a lot of click-through license agreements.
posted by QIbHom at 12:11 PM on April 22, 2010

I'm with the tribe on this one if their understanding was this was about diabetes and they weren't told anything else. The responsibility for full disclosure and ensuring that everyone understood what was going on is on the researchers, not this little group of people. And unless the study that linked them to coming across the Bering Strait was directly connected to the diabetes gene question, how did that happen? And would someone really need to go back that far to determine whether these people had the gene? I don't think so. The origin myth upset is a consequence of bad information or a lack of disclosure. Many tribes have a long history of abuse at the hands of anthropologists, researchers and so on. I don't blame them at all for being upset.
posted by etaoin at 12:12 PM on April 22, 2010

My understanding is that you shouldn't work on people or their parts without informed consent. If the ASU researchers didn't have it, then they should not have proceeded. That said, it seems awfully uncharitable of the Havasupai to lawyer up. I don't see how any tangible harm was done to them, and some of the research could have done them a lot of good (tho' doesn't seem to have). The better part of valor might have been for them to say "Next time, just ask us." Anyway, good and interesting post.
posted by MarshallPoe at 12:18 PM on April 22, 2010

We Jews and Christians also have our origin myths. The difference? our is true...those other people have are not
posted by Postroad at 12:20 PM on April 22, 2010

MarshallPoe - with the history of how the european settlers have treated those here before us, can you blame a tribe for reacting "uncharitably"?
posted by nadawi at 12:22 PM on April 22, 2010 [1 favorite]

Except that the tribe asked them for help with the illness that was crippling them, which the researchers agreed to do until they lost interest in that and wandered off to look at other things....that even turned out to be potentially damaging to the tribe. That's where the damages come in. After everything they've been through, I don't think it's incumbent on them to be all honorable and stoic. Don't think anyone would refrain from suing them for $x thousand dollars for any reason.
posted by amethysts at 12:22 PM on April 22, 2010 [3 favorites]

And reading further, this

Between 1990 and 1994, more than 200 blood samples were drawn. An assistant actually slept in the Supai medical clinic while gathering the samples. At night, the assistant clandestinely examined the clinic's records, looking for reports of schizophrenia among tribal members, according to court records.

is a straight-up HIPPA violation, no?

Look, I get that the SCIENCE VERSUS TRADITIONAL BELIEFS GRAR angle is of interest to Mefites, and makes a good story generally. But that's not the legal issue here, or even (IMO) the biggest of the ethical issues. Legally and ethically, this is about the right to make decisions about your own body and the data derived from it.

The Havasupai may have made decisions on those issues that you find questionable. You might not understand why someone would want to keep their status as a schizophrenic secret, or to avoid giving information to a religiously-charged study. But it doesn't matter. Rights are rights, whether or not you happen to think they're being exercised in a way that makes any sense at all.

(Put it another way: Rights are only worth anything if you get to make mistakes with them. "The right to give informed consent unless some stranger decides you don't need the information because you'll use it in a way he finds illogical" isn't really a right worth having.)
posted by nebulawindphone at 12:25 PM on April 22, 2010 [6 favorites]

We laugh and point when Arkansas tries to outlaw evolution because of their myth of origin, but we're supposed to cheer when a bunch of Havasupai get upset because science disagrees with their myth of origin? How about no?

Um. Isn't the difference here obvious? Unlike the conservative Christian right in AK and TX, none of the Havasupai seem intent on changing the curriculum/laws of the entire state or country to suit their own beliefs. They're not trying to force everyone else to believe the same things they do, they're trying to defend their rights to continue maintaining their traditional beliefs, at the expense of no other groups. (Er. Assuming, of course, that there are no other native groups asserting their right to reside on these ancestrally held lands?)
posted by elizardbits at 12:28 PM on April 22, 2010 [4 favorites]

Wow, lot of ugly knee jerk comments from people who clearly didn't read the links in here. I know the phrasing of the FPP pretty much set up a 'creation myths vs Science' argument as inevitable, but I'm still shocked to see how easily some are ascribing some pretty disgusting generalizations on the tribe. The thread seems to be correcting itself pretty well, and I hope it continues to do so because clearly there's plenty of room for a good conversation, but, you know, gross.
posted by kaspen at 12:32 PM on April 22, 2010 [2 favorites]

it's "after several centuries of horrific exploitation, violence, slavery, etc., it would behoove the (mostly non-Native, I presume) researchers to be completely straightforward and clear with native peoples they wish to study, so as not to appear to be yet another exploiter."

THIS, according to the talk among the local Indians of my acquaintance. From what I am hearing here in Arizona, this incident is NOT taken in isolation. While you, on the blue, may be able to simply see it as a cut&dry issue with clear borders... my Native buddies see it as part of a constant and ongoing exploitation of their people. The Havasupai tribe members I know are not the only ones cheering about this.

I'm really really surprised this happened at all. When I attended ASU for Anthropology in the early 90's, we were taught VERY CAREFULLY how to be ethical with local native populations (many of us did our field study in state.) I guess other departments didn't cover it as well. (Of course, ASU anthro dept had it's own native troubles* with repatriation of bones and grave goods. Native American Graves Protection and Repatriation Act (NAGPRA) wasn't passed until 1993.)

*I'm having trouble finding supporting links for this, but it was common knowledge in the Antho department and frequently discussed in the Arizona print media.
posted by _paegan_ at 12:33 PM on April 22, 2010 [6 favorites]

At least for the cancer research studies I work on, many of which collect samples either for pathology review or specimen banking or both, informed consent is also revocable. Most of the boilerplate consent questions regarding samples go something along the lines of:

1. Can we use your samples for cancer research?
2. Can we use them for research about other stuff?
3. Can we contact you in the future?

At any time, any patient can, for any reason, change his mind and say, "Actually, I'd rather you just destroy my specimens and, by the way, don't ever call me." At which point various switches are flipped in our database indicating that the patient had revoked consent.
posted by Skot at 12:39 PM on April 22, 2010 [1 favorite]

I read the article in the Times this morning and thought it would make a great FPP. Thanks for putting this together.

That said, it seems awfully uncharitable of the Havasupai to lawyer up. I don't see how any tangible harm was done to them, and some of the research could have done them a lot of good (tho' doesn't seem to have). The better part of valor might have been for them to say "Next time, just ask us." Anyway, good and interesting post.

I disagree. I'm glad the tribe sued and won. Researchers have been too casual for too long about native people's bodies, remains, botany, and knowledge. "Informed consent" is the tip of the iceberg -- researchers need to get serious about doing research in ways that are transparent and respectful of native peoples, and where the benefits of that research return to those peoples.

My favorite moment in the article was this:

But a few years later, a graduate student using new technology came up with a way to discern variations in the Havasupai DNA, which was stored in a university freezer, and he wrote a dissertation based on his research.

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.

“Did you have permission,” she asked during the question period, “to use Havasupai blood for your research?”

Just imagining the expressions on the faces of the poor grad student and their professors when that question was asked cracks me up. I really pity the grad student, but everyone involved should have known better -- using parts of people's bodies is a big deal, and when those body parts come from native groups you'd better have triple-checked your ethical compliance, because of the history involved.
posted by Forktine at 12:45 PM on April 22, 2010 [6 favorites]

That's the problem with carrying out human subjects research ethically--you can't be all, hey I've already got these samples in the freezer, let's check them for other things. Or hey, there's this new technique that is way more awesome than what used to be available, let's give it a try. Anyone who does this sort of research is supposed to have at least gone through some basic training where you learn about all of the horrible shit that has been done to disadvantaged people in the name of science. Not to mention all of the debates about DNA samples and potential future technological advances. Anyone with a PhD in a biomedical field has to at least think about such issues at some point, which is why I'm not cutting the primary investigator any slack.

Had the researchers had a more collaborative relationship with the tribe, maybe none of this would have happened--as in keeping them updated on what they were investigating with the samples. If the tribe knew then, they could have withdrawn their consent.

How their IRB let them get away with such a broad statement “study the causes of behavioral/medical disorders.” in their consent form is beyond me. That's basically saying here's my blood, do whatever you want with it for science. And probably indicative of how lax IRBs used to be until the government started cracking down ~10 years ago.
posted by mandymanwasregistered at 12:50 PM on April 22, 2010 [6 favorites]

We Jews and Christians also have our origin myths. The difference? our is true.

Joseph Campbell defined mythology as "other peoples' religions."
posted by Danf at 1:04 PM on April 22, 2010

And reading further, this ... is a straight-up HIPPA violation, no?

HIPPA wasn't passed until 1996, so strictly speaking, no. I don't know what other then-extant laws "clandestinely examin[ing] the clinics records" might have violated - I like to think there's something, though.
posted by nickmark at 1:09 PM on April 22, 2010

We Jews and Christians also have our origin myths. The difference? our is true.

Joseph Campbell defined mythology as "other peoples' religions."
posted by Danf at 4:04 PM on April 22 [+] [!]

that's sort of it, but really this.

He adds, "religion is a popular misunderstanding of mythology."
posted by toodleydoodley at 1:11 PM on April 22, 2010

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.

I'd be interested in seeing the original consent forms before getting too dogmatic about this. Skot's, for example, sounded pretty good to me.

On the impatient rationalist side of thing, I wonder - this blood's been sitting in a refrigerator all these years and only now they remember that its important for a spiritual journey?
posted by IndigoJones at 1:45 PM on April 22, 2010

It doesn't matter when they remember. They have the right to revoke consent at any time.

Look, I just gave blood to my midwife to have her check my thyroid, progesterone, and vitamin D levels. If I found out that she was secretly using it to try and develop some sort of overarching theory about fat white women in the Pacific Northwest, I'd be pretty damn pissed, because it's MY blood, and I'm the one who gets to say what happens about it.
posted by KathrynT at 1:52 PM on April 22, 2010 [3 favorites]

That's basically saying here's my blood, do whatever you want with it for science.

...I'd be pretty damn pissed, because it's MY blood, and I'm the one who gets to say what happens about it.

I totally understand why there are a lot of cultural and privacy issues around how samples can be used, and I totally understand why the IRB system exists (what with all of the horrific abuses that have occurred over the years in the name of science and everything) but I guess I actually have a lot of trouble really getting into this mindset. I mean, again, informed consent is of absolute importance for a lot of good reasons and of course you should be able to opt out at any time, but... why is it bad for someone to use a sample to do related (or even unrelated) research, especially if you aren't going to be personally identifiable in any way in the results? I mean, it's not like you're going to need those samples back, and having extra data points seems like it can be very helpful in most instances. Not to be snarky at all, I'm just trying to understand.
posted by OverlappingElvis at 2:23 PM on April 22, 2010 [1 favorite]

Because, like I said, it's my blood, and I don't agree that once it leaves my body anybody has carte blanche to do anything with it they want to. Whether or not I'm identifiable in the results has nothing to do with it; it's my blood, a non-free resource, that I gave up for a specific purpose. If they want to do other things with it, they can damn well ask my permission first.

I love research. I'm the daughter of two research scientists; when my daughter was born, we planned to donate her cord blood for research, and I specifically said that they could do anything they liked with it. (A complication with her birth ended up making the donation impossible, sadly.) I've given blood and other samples for research purposes, even open-ended research purposes, dozens of times. But using my tissues for purposes I've not consented to is unethical, period.
posted by KathrynT at 2:33 PM on April 22, 2010 [4 favorites]

I would be pissed if I gave them blood to do a certain test which they instead used to do something that had no benefit to me at all without following through on the thing they said they were going to do and not even bothering to let me know.

I've participated in a bunch of research projects as a subject and always check the little box that says they can use my data in any way they like. Because in those projects I'm always treated fairly and compensated fairly and I like contributing to science - they've already got my stuff, have at it. But I wouldn't be so happy to be promised something and get nothing.
posted by amethysts at 2:37 PM on April 22, 2010

why is it bad for someone to use a sample to do related (or even unrelated) research, especially if you aren't going to be personally identifiable in any way in the results?

well, in this case, ASU would never have gotten the samples in the first place if the tribe hadn't approached them with the diabetes problem.

I can see the tribe's dismay at:
a) not having their problem solved (or their questions substantially answered) with the resources *they* provided and
b) researchers using their blood to go spelunking unbidden into other disorders (schizophrenia), and anthro history (geographic origin), the results of which studies seem insulting and demeaning to the tribe, with their attendant respective implications of inbreeding (insufficient exogamy leading to schizophrenia) and cultural invalidation (migration contrary to myth of origin).

sort of like the Aesop's fable when the eagle drops a feather and the hunter makes an arrow with that feather and then shoots the eagle with that arrow.
posted by toodleydoodley at 2:39 PM on April 22, 2010

The Arizona Republic story annoyed me. Even as it documented the ways the researchers had behaved in a fashion somewhere between shady and downright unethical, it emphasized the origin story vs science angle in a way that was likely to prejudice readers against the tribe's claims. Not cool.
posted by immlass at 2:50 PM on April 22, 2010 [1 favorite]

you mean the part where they fail to address the discrepancy between people letting their blood be taken and their belief that leaving any part of the body behind (preserved in a lab) will prevent the soul from reaching heaven?

yeah, I wish that had been explained better. what exactly did researchers tell members of the tribe? that the blood samples would be returned? destroyed?

how would that square with their beliefs and how did they justify the actions in the first place?
posted by toodleydoodley at 2:55 PM on April 22, 2010

I can certainly understand being upset because the diabetes research didn't produce results. But science is like that. I doubt the researchers just gave up for no reason and pursued other things for grins and giggles. It seems much more likely that they didn't get any information useful to the Havasupai. They certainly should have kept them better informed about the state of the diabetes research, no question. But for the rest I don't see anything but superstition and ignorance trying to impede the progress of human knowledge.

I also find the concept that "informed consent" means "at any time any random donor can order that all work derived from their sample be destroyed" repugnant in the extreme.

More to the point, I disagree with the idea that I own my genes, or that anyone does. They are the record of our evolutionary history, as such I figure they're the property our our species collectively.

Research is a good thing. Impeding research is a bad thing. Impeding research for reasons of superstition is a very bad thing. They don't like the fact that reality conflicts with their precious origin myth? Too bloody bad, but don't blame the scientists blame mean old reality.

KathrynT I don't understand that attitude in the slightest. Once its out of my body I don't care at all what people do with my blood, genes, or any other sample. If people can answer interesting questions by using those samples I say that sounds great to me.
posted by sotonohito at 3:06 PM on April 22, 2010 [2 favorites]

Sotonohito, imagine this: what if blood you submitted for legitimate scientific research was instead used for shitty pseudoscience by the Creation Research Institute, like if they "proved" that humankind was created in its present form 6K years ago or demonstrated that people of African-American heritage were genetically predisposed to violence or something? That wouldn't tick you off?
posted by KathrynT at 3:11 PM on April 22, 2010 [2 favorites]

It doesn't matter when they remember. They have the right to revoke consent at any time.

You miss my point. I never said they had forfeited such a right. Indeed, I did just say that I thought skot's consent form was a good one (revocation at any point and return of samples).

I'm suggesting that this religious objection turned up a little late in the game to be wholly credible. Me, if I thought my blood was necessary for transition to the next world, I'd be keeping pretty close track of it at all times. And demanding it back as soon as its scientific work was done. And demanding the blood of my newly dead relatives back ASAP once they died. Far as the links suggest, none of this happened, no one is on record as caring until now, much less at the time the blood was first taken.

Unless of course there is more to the story that they left out, which is entirely possible.
posted by IndigoJones at 3:16 PM on April 22, 2010

I dunno, I can think of some legitimate reasons. Perhaps they thought the samples would be used up or destroyed by the testing, for example, and didn't realize that wasn't true until they saw that other research had been done using the samples.
posted by KathrynT at 3:19 PM on April 22, 2010

When your relatively recent ancestors' bones are on museum shelves or in anthropologists' drawers as specimens of our common humanity, get back to me about informed consent.

When your most sacred and private religious practices have been sensationalized and publicized with no input or oversight from your religious leaders, get back to me.

When your cultural and intellectual property has been stolen from you as the common property of mankind because, after all, it's in oral tradition and you can't prove you created it, and besides you're just a dumb Indian, get back to me.

A few hundred years of treating people like shit, not to mention outright, sustained genocidal policies passed off as "science," and y'all are surprised they might take an immoderate position in response to your perfectly reasonable proposal to just do "science?"

Don't get back to me.
posted by fourcheesemac at 4:08 PM on April 22, 2010 [7 favorites]

I would also like to add that Havasupai Indians are American citizens. They have the same expectations and rights to privacy and individual choice and self-determination as any other American citizen. But they have an additional right to tell America to fuck off, because unlike most other American citizens, they were living here for a long time before illegal immigrants showed up and trashed the place.
posted by fourcheesemac at 4:10 PM on April 22, 2010 [3 favorites]

Unless of course there is more to the story that they left out, which is entirely possible.

Of course there is. About 500 years more.
posted by fourcheesemac at 4:11 PM on April 22, 2010 [2 favorites]

I don't know. I didn't see a copy of the consent form or the procedures for informed consent. I not only do population research (epidemiology) but also sit on the local IRB. It is pretty common, in my experience, to consent for storage of samples for a biorepository, i.e., for any research ideas that come up for which the samples and other information about the subjects can provide answers. IF the individual members consented to this and IF the procedures followed by the researchers were consistent with that consent, then I don't think the tribe should have a case. If they do, this will set back biorepository-based research, because most times it isn't feasible to trace each sample back to the original donor and obtain specific consent for each new investigation. The cost would be prohibitive.
posted by Mental Wimp at 4:25 PM on April 22, 2010

Mental Wimp, I agree with you IFF there is evidence that the Hapasupai genuinely were giving informed consent. Given that the consent form was in a language that was a second language for most of them, I think the burden of proof must be on the researchers to show that the subjects truly understood all the ramifications of what they were signing.
posted by KathrynT at 5:32 PM on April 22, 2010

From the 'researchers' conclusions' link:

Immediately after obtaining the blood samples (for the diabetes study), Markow illegally obtained more than 100 medical charts from the Supai Health Clinic in the Supai Village to identify patients with schizophrenia, according to court records.

Researchers also collected handprints from test subjects in 1992, claiming they would be used in the diabetes study, but they were actually used in a research project involving inbreeding, according to court records.

So: that there was illegal activity from at least some university researchers is not in dispute at all? Seems to me if one were to jerk one's knee in any direction, the obvious one would be in the direction of sympathy for the native people, instead of the "scientists" who broke the law. Note ASU isn't denying the samples were mishandled; they claim to have discovered that fact themselves:

[ASU spokesperson] Renzulli disputed Rosette's version of events, saying it was an ASU researcher who came across the mishandling of the blood samples and reported it to officials. ASU then launched an independent investigation to track the blood samples and return them to the original donors or their families.

The initial framing of this post is unfortuante. This isn't "problematic" because the published results conflict with the tribe's origin myth; it's problematic because the native people may not have given consent for their blood to be used the way it was used. $10 says the university settles before trial.
posted by mediareport at 5:41 PM on April 22, 2010

In doing more research, I find it troubling that apparently Markow took the blood months before ASU approved her project -- and the project she was seeking approval for was schizophrenia research. That plus the fact that her assistant says that he never got any signatures on anything before taking the blood (a claim Markow denies, but says she can't produce the signatures because she lost them) are not really increasing my confidence in the research ethics here.
posted by KathrynT at 5:45 PM on April 22, 2010 [3 favorites]

I think the important point is that they've won a judgment that is draining nearly a million dollars from scientific research budgets, and I think that's a very bad thing. That's a million dollars that might, otherwise, have found cures for diseases, that might have given us greater insight into our history as a species, that might have helped solve climate problems, that might have helped do any number of vital and important things.

I can think of few things outside basic survival necessities that are more important than scientific research, and $700,000 out of the research budget of a university is a crippling blow to one of the most important things we are doing as a species. That this blow has been dealt because of religion is, to my way of thinking, vastly worse. It's Galileo being locked away by the Church all over again.

I very much see the Havasupai as the bad guys here and I am baffled that anyone sees this religion inspired attack on science as a good thing in any way whatsoever.

KathrynT I won't pretend I'd be happy if my blood were used by pseudo-scientific quacks, but I don't think I'd have any legitimate objection to their use of it. I might have objections to their methodology, lack of peer reviewed processes, etc but not to their use of my genetic material. I'm quite serious when I say I don't think its my property in any sense whatsoever. Nor do I think "your" genetic material is your property in any sense whatsoever. Its too important to be bound by considerations of private property.

four4cheesemac The theft of cultural artifacts is a completely different issue from the use of genetic material. I don't see why you brought it up unless you're trying to muddy the waters with guilt by association.

Their ancestors were the victims of attempted genocide by the US government and its (white) citizens. Today the US government's attitude towards the First People can, at absolute best, be described as indifferent neglect. Anyone who isn't an idiot chanting "USA! USA! USA!" knows and acknowledges that fact, and acknowledges the undeniable fact that the US government has a long and proven record of breaking every treaty it ever made with the First People, behaving in a deceptive and honorless fashion, and in general being quite evil towards them. Anyone with any compassion in the slightest would like to see the US government's policy towards the First People change for the better.

But none of that should mean that we bow to their superstitions and gut science anymore than we should bow to the superstitions of Southern Baptists in Arkansas when they want to gut science.

Science is important. Superstitious nonsense about origin myths isn't. It's that simple.

If reality conflicts with their myths then they should abandon their myths, or at the very least cling to their myths and stay out of the way of people trying to do important things. I strive for intellectual honesty and consistency. How can I justify granting more respect, consideration, and concern for the superstitions of the Havasupai than I do for those of the Southern Baptists? I can't. I must give each set of superstitious nonsense exactly the same difference, concern and respect: none at all.
posted by sotonohito at 5:57 PM on April 22, 2010 [1 favorite]

Any DNA researcher who doesn't absolutely nail down their ethics review process and their informed consent limitations is, in a word, incompetent.


Another, very similar but much older (samples taken ca. 1980 for one purpose; used later for another; shit hit fan ca. 2000) example from Vancouver island can be seen here- this case will be familiar to any human DNA researcher working with aboriginal people and to have not learned a damn thing from it suggests the researcher is not just incompetent but most likely unethical/uncaring/unprofessional as well.
posted by Rumple at 5:58 PM on April 22, 2010

To say that this has happened "because of religion" is a gross, gross misunderstanding of the facts of the case. That may have been one component of what upset the Havasupai, but follow the link I gave in my last comment -- the ethical violations here are very, very far-reaching. If the scientists in question wanted to preserve their money for curing diseases and advancing human knowledge, then maybe they shouldn't have made a mockery of the informed consent process.
posted by KathrynT at 6:01 PM on April 22, 2010 [3 favorites]

The theft of cultural artifacts is a completely different issue from the use of genetic material.

Theft of genetic material is, indeed, much worse. And yes, without informed consent, this amounts to theft of genetic material.

Science is not some sterile monastery separate from culture, as some seem to believe. Science must be held to the exactly the same ethical, moral and legal responsibilities as any other behaviour. Or, even higher ones, since it has so much potential for harm alongside its potential for good.

I mean, don't make me ask, "you know who else though Science should not be held back by ethical constraints?"
posted by Rumple at 6:08 PM on April 22, 2010 [1 favorite]

KathrynT What "ethical violations"?

The Havasupai gave genetic samples for a project aimed at understanding their frequency of diabetes. That appears not to have produced any useful results.

Other people then used the samples for other projects.

I fail to see a problem.

There does seem to be a violation of medical record privacy. I'll agree that's bad and shouldn't have happened. It also looks like the only ethical violation.

Rumple wrote Theft of genetic material is, indeed, much worse.

How can anyone steal what you don't own? Your genes are not your property, not from my POV anyway.

I very much think science should be held back my ethical constraints. Show me any harm done to anyone by conducting tests on their genes and I'll agree that the science done improperly. I suspect you'll have a difficult time demonstrating how genetics tests cause harm...
posted by sotonohito at 6:22 PM on April 22, 2010

Science is important. Superstitious nonsense about origin myths isn't. It's that simple

If you really believe "it's that simple" -- if you really believe that science-vs-religionis the only or even the most significant issue in this case -- then a reader could be forgiven for strongly suspecting the most important thing in the whole wide world to you is the marginalization of religious thought, and if any other principle gets in the way of that goal, it falls by the wayside.
posted by weston at 6:23 PM on April 22, 2010 [2 favorites]

...use of genetic material.

Theft of genetic material...

It really is all about how this issue is framed, I guess. I think it's a good thing that the tribe won this case for personal privacy/autonomy reasons, but I don't think theft is the right word here any more than it's an entirely appropriate term with media piracy (different discussion). The use of samples without permission was unethical (I mean, I don't care whatsoever what happens to my bodily fluids in a research context as long as they were removed voluntarily, but I totally respect that other people don't share that), but we're not talking about scientists sneaking around taking blood samples from people while they sleep. That would be theft.
posted by OverlappingElvis at 6:24 PM on April 22, 2010

What "ethical violations"?

Are you even reading this thread?

Immediately after obtaining the blood samples (for the diabetes study), Markow illegally obtained more than 100 medical charts from the Supai Health Clinic in the Supai Village to identify patients with schizophrenia, according to court records.

Is there something about "illegally obtained" that's unclear to you?
posted by mediareport at 6:43 PM on April 22, 2010

What "ethical violations"?

Read the article. They collected blood without any consent at all. They didn't collect blood for a diabetes experiment; they collected blood for a schizophrenia experiment, but lied to to the subjects. They told the subjects that their names would never be associated with the samples, yet delivered the samples with the subject's individual names on them. And regardless of whether or not YOU think that the scope of research doesn't need to be defined by the consent form, the scientific and ethical community feels differently; many, many internal guidelines were breached.
posted by KathrynT at 6:43 PM on April 22, 2010 [1 favorite]

sotonohito: The theft of cultural artifacts is a completely different issue from the use of genetic material. I don't see why you brought it up unless you're trying to muddy the waters with guilt by association.

Says you.

Unfortunately, I think that's nonsense, and specious nonsense at that. "A completely different issue" is a nice way of de-linking issues that are in fact fundamentally linked in the emotions and reasoning and political strategies of all actors here. I note the mockery of Havasupai cultural beliefs in this thread, not as a species of the general attitude about religion here (in which I participate when the subject is creationist wackery) at camp MeFi, but as suggesting that because people believe these things (and assert a certain modern ontology to those beliefs that empowers them in modern contexts like this) they are incapable of also being rational, scientific, intellectual people deserving of fundamental respect for their agency, individuality, and inherent human dignity. (One could argue other communities of color get the same treatment, actually, meaning this "isolated" issue actually overlaps something much bigger even than indigenous cultures -- and that of course is racism as such.)

Just put yourself in the position of a medicalized subject in which people who say they are there to help (and may in fact be) are also there to exploit, and then put yourself in the position of not having the language or education to understand an intentionally obfuscatory apparatus for "informing" you of the rights you are giving up (if they even did get proper consent in IRB terms). And add 500 years of genocide, abetted by 150 years or so of "science" that has only recently begun to shift its locus of commitment and service, and add in that it's your grandmother whose blood they took and won't give back.

I'm sorry to sound so passionate, and regret my heated tone in my first comment in this thread. But sometimes heat is called for. This is my area of academic expertise as an anthropologist, and I can assure you the analogy between cultural and human rights (and their intimate intersection, evident in this very debate -- do you think the Havasupai are so premodern that they don't understand science?) are very vivid and contested topics in the current literature.

I have been participating in that debate within anthropology and linguistics (but also in a natural science context) in a serious way in recent years, with applied work on getting past situations like the one described in this FPP, albeit from the cultural property side. And in my work, I actually propose to address conflicts like this very one with a totally different model, moving from an adversarial, transactional relationship between the community of science and Native communities to a collaborative, community based model. I won't go into concrete detail about the specifics here, but the surprise answer to the wrongheaded "debate" running through much of this thread (and the linked articles) is not "science is right!" or "Havasupai are right!," but rather "we need more Havasupai doctors, and we also need more non-Havasupai scientists to engagemen with the challenges facing their community." Universities (or as I prefer, University-based communities) and Native communities don't have to be enemies. They have so much to offer each other. We have to get past the mistrust and disdain. We have to acknowledge that each situation is, indeed, different from any other, but that they are all linked in a network of broken promises and gross exploitation and stolen knowledge and body parts. We have to work in communities like they are labs, but make our labs into community institutions too. We need to exchange people between universities and Native communities all the time and on a deep level -- Native students, fellows, and visitors on our campuses, the full resources of a university applied to solving real problems in real Native communities.

But the first principle of a paradigm shift in this domain is that science should acknowledge how badly it has fucked up in the past (and as the facts come out here, in this very case) *because* it was dealing with a Native world that, for reasons reflecting the historical racism that gave us reservations in the first place, was viewed as less than fully deserving of basic human rights, or usually basic human respect and dignity for a long, long, death-filled, language-erasing, diet-changing, community-trashing time. Doing science in the wake of scientific complicity in genocide is not something we can purify by ideological fiat. It takes a change in basic stance toward the nature of the problem at hand. Being humble and granting the specificity of the historically justified mistrust of science held by many Native people and institutions is how you don't have problems like this and instead build partnerships when both scientific and Native interests are mutually served in sustainable ways and in an atmosphere of trust.

The Havasupai, by the way, are leading the fight against uranium mining in the Grand Canyon. Is that mere magical thinking? If so, it's been an effective force.

Here's some of the deeper story, so you see why the Havasupai would feel as they do: Wikipedia being not bad on the subject:

In 1882 President Chester A. Arthur executively ordered that all land on the plateau of the canyon, which was traditionally used as the range of land of winter homes for the tribe, was to become public property of the United States. The order in effect delegated the Havasupai to a 518 acre plot of land in Cataract Canyon, leaving 90% of their aboriginal land for American public use. According to reports the Havasupai were completely unaware of the act for several years.
. . . the loss of almost all of their land was not the only issue that the Havasupai were contending with. The increase in settlers in the local region had led to a depletion of game to hunt and soil erosion, a result of poor irrigation techniques touched off a series of food epidemics.
Furthermore, interaction with these outsiders sparked a deadly disease outbreak amongst tribe members who were fatally ravaged by small pox, influenza, and the measles. By 1906 only 166 tribe members remained, half of what Garces saw when he first came across the tribe in 1776.
. . . in 1903 President Theodore Roosevelt made his famous visit to the Canyon, where while hiking down the Blue Angel Trail he came across several Havasupai whom he informed had to leave the area immediately. The President told them that their home was to be turned into a public park for all American citizens to visit and admire. It took some years, but in 1908 the Grand Canyon was declared a national monument and by 1919 it had received National Park status. . .
Issues regarding health within the Havasupai population retarded its growth to the point where almost an entire generation was lost due to infant and child mortality. . .
No matter how hard the Havasupai fought to keep their methods and traditions alive, the federal government and the National Park Service found ways to strengthen their strangle hold on the tribe. Such actions as tearing down and burning traditional homes of residents and replacing them with cabins because the original homes were viewed as an eyesore is just one example of the right of way the Park took with the tribe. A . . . In 1968 the tribe won their Indian Claim Commission case against the United States. The court findings stated that the Havasupai had had portions of their land taken from them illegally in 1882 and that the tribe was entitled to recover the land from the US at fair market value (ICC 210). That value ended up being 55 cents an acre, totaling just over one million dollars. Although the case was a landmark for the Havasupai in the sense that it was proven in a court of law that the federal government had inappropriately taken their land, they still did not receive what they valued more than any dollar amount: their land."

The article goes on to describe how Havasupai have thrived since recovering their land, and their dignity thereby. It is a remarkable story of a community and cultural renaissance, and a successful engagement between modern and traditional aspects of Havasupai life and between the tribe and the broader world.
posted by fourcheesemac at 6:49 PM on April 22, 2010 [14 favorites]

I think the important point is that they've won a judgment that is draining nearly a million dollars from scientific research budgets, and I think that's a very bad thing.

Jesus, talk about blaming the victim. Don't blame the Havasupai, misled and lied to, blame the effing researchers who have clearly never been within a hundred mile radius of an ethics committee (do you have them in the US? Sounds like ASU sure could use em), displayed a flagrant disregard for the law, and then scurried about trying to hide the grievous mistakes.

Those are the people idiots draining money from budgets. When someone drives their car into yours, and you sue them, it's not your fault that they've lost some money, despite the fact that you took them to court. Crikey. I'm kind of astonished you can't see the issues here.
posted by smoke at 6:58 PM on April 22, 2010 [4 favorites]

Actually, a million bucks is exactly what the Havasupai had to pay to get their own land back from the National Park Service (fair market value when the treaty was broken). It was a real deal for prime Grand Canyon real estate, but still pretty damn insulting to have to pay, as if they had given it up with informed consent in the first place. (And fuck Teddy Roosevelt, right?)

So it sounds like a wash to me.
posted by fourcheesemac at 7:03 PM on April 22, 2010 [4 favorites]

Oh and smoke, do we have ethics committees? You bet we do. They are called IRBs, and the IRB is the less obvious actor in this story. But IRBs exist to indemnify universities, not to ensure justice or fairness in research. They frequently impose ridiculous constraints and ignore huge risks to the people being "informed." (Hence, the people are not often informed, and their consent is usually based on misunderstanding if there is any barrier to translation.)

I know. I'm a PI on about two dozen IRBs right now. I'm currently fighting over the question of whether a dance class is a "traditional educational setting," or whether it imposes greater risk of embarrassment to (adult) students under observation than a math class. IRB members clearly don't dance much, I guess.
posted by fourcheesemac at 7:06 PM on April 22, 2010 [2 favorites]

(two dozen IRB *protocols*, not IRBs as such)
(and "IRB" stands for "Institutional Review Board," but my preferred acronym is "CYA")
posted by fourcheesemac at 7:07 PM on April 22, 2010

First of all, skimming this thread, it seems that the majority of posts support the Natives.

And I'm going to have to join in. These scientists sound like total hacks. I mean, come on, ASU? Do you really think there's any ground-breaking critical science coming out of ASU today? None of the research they mentioned seem to important. And money missing for scientific research in the future? Somehow I doubt the world will be harmed by missing out sequels to "20/30 Hindsight: the new pavement optimization in the Arizona State Highway Network".
posted by delmoi at 11:33 PM on April 22, 2010

weston wrote suspecting the most important thing in the whole wide world to you is the marginalization of religious thought

Yes and no.

Yes, I do think that marginalizing religious thought is critical for our survival as a species, and our advancement in our understanding of the universe. There are important things, and unimportant things. Religion, by definition, falls into the latter category. I don't care what people believe in private, but I do get angry, frustrated, and outraged, when they use religion to get in the way of anything more important; and just about everything is more important than religion.

On a scale of importance religious thought should rank alongside the question of whether or not Han shot first. It is, in other words, nearly completely unimportant and I find it highly disturbing that it is permitted to interfere in any way whatsoever with important issues.

No, I don't think that overt efforts to push religion to its proper, marginalized, place are supremely important. If things are allowed to work properly religion will be marginalized as important things are raised above it, rather than by deliberate efforts to stifle religion. History shows us that deliberately trying to quash religion tends to have very bad results.

That said, when religion conflicts with anything more important I do think we have an obligation to stomp the religious nonsense and aggressively push it back into its proper, unimportant, place. History shows us that the consequences of not aggressively pushing back against that sort of thing are dire.

In the case at hand, therefore, we have several issues, of which only one is important.

1) Important: Some researchers improperly obtained medical records. That is a bad thing, an ethical violation, and action should be taken against those researchers. Unlike religion medical privacy is important.

2) Unimportant: the Havasupai have some religious beliefs about blood, they are trying to use this nonsense to impede research and get valuable genetic samples destroyed. This merits the same sort of point-and-laugh attitude we routinely adopt when discussing Creationists.

3) Unimportant: research on Havasupai genetic material reveals that their creation myth, like every other creation myth in existence, is fiction; Havasupai are upset about this. Again, a point-and-laugh attitude seems appropriate here.

4) ???: the Havasupai don't like that the genetic samples they voluntarily gave are being used for research beyond the scope of what they originally thought the research would be for.

On the last I'm baffled and, again, outraged. Outraged because science is important, getting in the way of science, therefore, ticks me off. Baffled because the entire concept seems absurd in the extreme, the entire mindset behind the attitude is alien to me.

mediareport I stated that was an ethical violation, and condemned it. I see no other ethical violations in this case.

fourcheesemac wrote And fuck Teddy Roosevelt, right?

If nothing else we can at least agree on that. His Nobel Peace prize is probably less deserved than any other, including Henry Kissinger's.

I note the mockery of Havasupai cultural beliefs in this thread, not as a species of the general attitude about religion here

I disagree, at least with regard to my own mockery, I can't speak for others of course. Why should we grant the Havasupai beliefs more respect, deference, etc than we grant to Southern Baptists?

They, like all First People, were unarguably harmed by the actions of my ancestors and continue to be harmed by the repercussions of generations of attempted genocide, social and economic marginalization, etc. If you want to argue for a cash payout of a couple million per individual to make things right I'd probably be on your side. It'd be a better use of a few billion dollars than wasting it in Iraq/Afghanistan.

If you want to argue that the history of genocide, abuse, broken treaties, etc that the First People suffered at the hands of my ancestors means I'm obligated to respect their religion I must disagree in the strongest possible terms. Superstitious nonsense is superstitious nonsense, it doesn't matter if the person believing it is a privileged white guy, a Jew fresh from Auschwitz, or a Havasupai tribesperson suffering economically from the acts of the US government.

and add in that it's your grandmother whose blood they took and won't give back

Why would I care what's done with my grandmother's blood? Actually, I do care, though in the opposite way from what you intend. I'd much rather it were used for research than destroyed or simply left to rot.
posted by sotonohito at 7:06 AM on April 23, 2010

Why would I care what's done with my grandmother's blood?

Therein lies the problem.
posted by fourcheesemac at 7:23 AM on April 23, 2010

If you want to argue that the history of genocide, abuse, broken treaties, etc that the First People suffered at the hands of my ancestors means I'm obligated to respect their religion I must disagree in the strongest possible terms.

And therein lies another. You don't have to respect their religion, merely their humanity.
posted by fourcheesemac at 7:25 AM on April 23, 2010

(And, sorry to pepper, their right to practice their religion freely, just like any American citizen, if doing so doesn't harm you. No one is telling you that you or your grandmother can't give your entire bodies to scientific research if you want, but that doesn't mean anyone else has to do so.)
posted by fourcheesemac at 7:34 AM on April 23, 2010

fourcheesemac The last time I checked human rights or respect for humanity didn't cover acquiescing to demands to destroy voluntarily given genetic samples.

If the researchers had snuck in and secretly taken blood samples that would be a different matter. If they'd gotten a goon squad to hold down the tribespeople and involuntarily taken their blood that too would be a different matter.

But, and please correct me if I'm wrong here, no one has ever claimed that the Havasupai didn't give their blood voluntarily. The issue seems to be that they have a religious belief, and apparently one they didn't think of until just now, mandating that all physical remains of dead people be destroyed, so now, after the fact, they're demanding the destruction of the blood samples.

Can you see how, to me, this would look an awful lot like people demanding that science be impeded in the name of religion? How this would look an awful lot like the same sort of stuff we mock when its white guys in Arkansas? We don't want to let the Creationists and their religion get in the way of biology, why should I adopt a different way of thinking just because the religion in question is that of the Havasupai?

>>Why would I care what's done with my grandmother's blood?

>Therein lies the problem.

Can you elaborate on that please? I'm afraid I've missed your point.

And, sorry to pepper, their right to practice their religion freely, just like any American citizen, if doing so doesn't harm you.

Exactly. I'm not at all claiming they don't have a right to practice their religion, they can believe anything they want, same as the Southern Baptists. But, from my POV, that right does not extend to dictating to researchers what sort of tests they can run on freely given samples, nor to demanding (long after the fact, and without ever mentioning it before) that the samples be destroyed when the donor dies.

Freedom to practice religion != freedom to force others to act in accordance with your religion.
posted by sotonohito at 7:55 AM on April 23, 2010

freely given samples

By which you mean samples obtained under false pretenses (with the Havasupai believing it was for diabetes research when it was actually for schizophrenia research), which is a significant part of the problem. Or are you suggesting that it's OK to lie to research subjects to get samples?

Would you be OK with researchers lying to you to obtain blood samples? I wouldn't, and it has nothing to do with religion (I have none). It has to do with not trusting unethical scientists and/or the results of their work. If they lie to me to obtain the samples, how can I or their peers trust that they're not lying in the results they produce, or that their research isn't sloppy, or any number of other points where research credibility can be compromised? I wouldn't trust the results of the research conducted by these scientists now without significant support from other, peer-reviewed experiments.

Unethical, shitty research is the issue here, not the religious faith of the Havasupai. When researchers do unethical things, their research is compromised. When the IRB fails to do its job and cover the university's ass, the university loses money dealing with lawsuits. There's plenty of blame to go around, but the Havasupai aren't the folks behaving unreasonably here.
posted by immlass at 9:25 AM on April 23, 2010 [6 favorites]

But, and please correct me if I'm wrong here, no one has ever claimed that the Havasupai didn't give their blood voluntarily.
But Sotonohito, that is what we're saying. They gave their blood voluntarily for a precise purpose. When the blood was used for other purposes, those uses were no longer voluntary.

Most people here are talking about informed consent, a concept which you don't seem to be grasping. We don't know exactly what was on the IRB consent form that the Havasupai signed, but we do know that their understanding was that the blood was only to be used for particular research, so either they were not properly informed, or the researchers violated the terms of the consent form. And we know that most IRB consent forms allow consent to be withdrawn at any point, which they have now done. Whether you agree or not that informed consent is important, or that consent should be retractable is moot, since the laws in place have established that this is how it should be.
posted by twoporedomain at 9:35 AM on April 23, 2010 [3 favorites]

Outraged because science is important, getting in the way of science, therefore, ticks me off.

OK, then be outraged at this.

Because of these ethical violations, the Havasupai will certainly never, ever participate in any research of this nature again. Neither will any other group of people who hears about it, including the kinds of geographically and reproductively isolated groups who could be so valuable to population science. By lying to the Havasupai about what their blood was used for, these scientists have potentially wrecked dozens if not hundreds of years of future research.

There is a long, long history of American scientists being untruthful with the subjects of their science, and every one of them has damaged trust. (Tuskegee, Marshall Islanders, etc.) Every time something like this happens, it adds to the burden of mistrust and makes it harder for researchers to do legitimate and important science. You're ticked off when things get in the way of science? Get ticked off that these guys have poisoned the well, not that a bunch of human beings got mistrustful after discovering that they were lied to.
posted by KathrynT at 10:47 AM on April 23, 2010 [8 favorites]

twoporedomain I think the idea that informed consent requires that for every single new question, every single new technique, researchers wish to try they have to go back and beg permission to use existing samples is absurd, ridiculous, unnecessary, and an insane impediment to the advance of human knowledge.

Can you imagine what the state of computing would be like if everyone had to go, hat in hand, and beg Intel for permission to use their chips for a new and novel purpose?

What the state of the internet would be like if everyone had to go, hat in hand, and beg AT&T for permission to use their network in a new and novel way?

If the current state of affairs in science is that genetic samples are given for one, precisely defined, purpose and all further research must wait until every single donor can be tracked down and their permission granted for another, precisely defined, purpose than I argue that scientific standards should change. I can't imagine how any progress can be made if that's the rules people think they're supposed to work under.

KathrynT How about I get outraged at the people with religious superstitions demanding that genetic samples be destroyed when the donor dies? Why isn't that on the table?

More to the point what breach of trust? They gave their samples, the diabetes research didn't pan out, that's too bad. But why should they then have the right to claim they were lied to?

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.”

They gave their permission for a lot more than diabetes research.

Dr. Markow examined several genes that were thought to have medical relevance, including for schizophrenia, metabolic disorders and alcoholism, she said, but found little to pursue. The Havasupai did not, it turned out, share the gene variant linked to diabetes in the Pima.

Markow did what the said she'd do, looked for the genetic link found in another tribe, and it didn't work. That's too bad for the Havasupai, but why should anyone then destroy all samples and forbid all future research into other topics?

Looks to me like the breach of trust is on the part of the Havasupai, not the scientists. Per the NYT the scientists explained what they were doing, went out of their way to produce easily understood consent forms, etc. Now, out of the blue, the Havasupai decide that all that doesn't mean squat and they want to screw over the researchers.

One reported a high degree of inbreeding, a measure that can correspond with a higher susceptibility to disease.

Ms. Tilousi found that offensive. “We say if you do that, a close relative of yours will die,” she said.

I find Ms. Tilousi's offense laughable. The population of the tribe is 650. With a population that small close inbreeding is inevitable. In fact I'll suggest that it seems, to my layman's understanding, that having a tiny inbred population is likely the cause of their diabetes. Look at the British royal family (and various other inbred European aristocrats) and their tendency towards hemophilia.

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.”

And that reads exactly like the standard crap from Creationists. "When people tell us we came from monkeys it hurts the elders who have been telling these stories to our grandchildren". Maybe they should stop lying to their children. Why isn't that option on the table?

The Havasupai were, undoubtedly, screwed over in the past. But in this instance they look like the victimizers, not the victims.
posted by sotonohito at 11:41 AM on April 23, 2010

Some of them signed a consent form, some of them didn't. The consent form was given to them in a language they weren't all literate in, with an oral presentation being given that had very different content than the signed consent form. If I give you a consent form in Chinese and tell you that I'm collecting semen samples for motility / morphology research but it actually says that your sperm will be used to conceive hundreds of children, what have you consented to?

Here's a question for you: If informed consent was truly obtained, why did the PI instruct her assistant to lie about the nature of the research? And here's another: If that consent was truly that broad, why did the grad student who presented research involving the Havasupai samples have to redact that segment from his eventual research after the question of permission was raised?

You seem to have a profound ignorance of how ethical standards and practices work in the scientific community. Your own feelings of what are right and OK aren't the issue; the issue is that even by their own rules, Markow et al. misbehaved extremely badly. It is incumbent on the researcher to make sure their subjects understand what is going on. They clearly failed at that, because the Havasupai are now very upset. If they'd done their job, there would be no reason for upset.
posted by KathrynT at 11:58 AM on April 23, 2010 [1 favorite]

If anyone is interested, UNC's IRB has a really useful website with sample consent forms and questions to think about when planning your human research. Here is where they address the storage of samples for future unspecified research. There are several points listed that were evidently either not discussed or made clear to the Havasupai people, or the researchers did not follow their own guidelines. For example:

Who owns the samples?
Will the specimens be identified?
Will IRB approval be required for future research?
How long will the samples be stored? Can they be withdrawn?

Note that these questions can be answered in such a way to give the university a lot of rights to future research. But the researchers do have to demonstrate that they've put thought into anwering them, and communicate the answers clearly to the subjects, especially in terms of what rights the subjects are signing away.
posted by twoporedomain at 12:22 PM on April 23, 2010

sonitohito, I notice that you have nothing to say about the idea that the ethics of the researchers bring their work into question. Are you ceding that point or are you merely unwilling to address it?

This, btw, is exactly what I was complaining about with respect to the newspaper presentation of the story. It's slanted in a way that biases the readers against the Havasupai, and frankly plays on racism and cultural prejudice (the Havasupai were too dumb/ignorant to know what they agreed to) when the story here is that the researchers involved lied to the Havasupai and in addition to the blood samples, stole their medical data. The whole thing is appalling, and if the allegations about a research assistant clandestinely examining medical data while s/he sleeping in the medical clinic are true, in addition to whatever financial penalties land on them, the researchers involved should be blackballed from medical research.

Defending these guys is not defending science. We've already essentially Godwinned this thread once about shoddy, lying scientists; let's not do it again.
posted by immlass at 12:38 PM on April 23, 2010 [1 favorite]

I mean, come on, ASU? Do you really think there's any ground-breaking critical science coming out of ASU today?

Well, this guy seems to be doing some good. And then there's this stuff. But, yeah, they're not the University of Arizona.

Here's a question for you: If informed consent was truly obtained, why did the PI instruct her assistant to lie about the nature of the research? And here's another: If that consent was truly that broad, why did the grad student who presented research involving the Havasupai samples have to redact that segment from his eventual research after the question of permission was raised?

To me, these are the most damning facts. They imply that proper consent was not obtained, and they deceived both the IRB and the tribe. In the process, they hurt the tribe, their students, and their institution. I suspect the IRB has some culpability, because asking the right questions would have uncovered this mischief. The IRB I sit on often uncovers hanky panky by asking questions when something doesn't seem quite right and we take that responsibility very seriously. In a recent case, we did an audit because of inconsistent statements in the application and found similarly sloppy application of the consent process. We ended up shutting down the study.

If ASU hopes to sustain a human subjects research program, they need to get their act together. The damage goes far beyond paying off the tribe.
posted by Mental Wimp at 12:39 PM on April 23, 2010 [1 favorite]

sotonohito, I notice that you have nothing to say about the idea that the ethics of the researchers bring their work into question. Are you ceding that point or are you merely unwilling to address it?

I don't think he can even see the point. I'm pretty sure that we're all discussing something that's rendered largely invisible to him. It might actually be that his brain is being rendered chemically incapable of recognizing any other issue by the overriding antipathy at the invocation of a creation myth. It's certainly stamped on nearly every paragraph he's written in the thread... all while, curiously, no one is advocating a defense of creationism.

I think he really believes we're talking about enshrining religion over science instead of ethics.
posted by weston at 1:36 PM on April 23, 2010

I just want to jump in and hit what I think is a pretty important point about why the Havasupai's religious beliefs are allowed to influence the outcome of this case, in a way we wouldn't want, for example, fundamentalist christian beliefs to influence rights and opportunities for beneficial health science research.

The United States of America is really a secular nation, founded by more-or-less christian deists who didn't want the national government to establish a national religion - that's what the establishment clause means in the first amendment. While a majority of US residents report believing in *a* god, we do not have a religious society or a religious culture. That is, although religion is important to most USians, in large part, we form relationships and communities for reasons other than religious culture and regardless of the religious culture of our fellows. But that's the USA.

The Havasupai, a sovereign dependent nation whose organized existence predates Columbian "discovery," are not a secular nation (and not subject to all US laws in the way the rest of us are). Their history, culture and religion are inextricably tied together. We don't get to tell them their myth of origin and cultural history is a lie because they did not sign the same contract the rest of us signed.

Furthermore, one of the things it means to live in a secular nation is that we (USians) are free to adopt or reject any religion at any time. Our religion is not an inseparable part of our shared cultural history, thanks to the efforts of Messrs. Jefferson, Madison, et al. But a tribe's cultural history includes its religion and story of origin. It's part of the whole package, and to reject it is to reject belonging to one's people.
posted by toodleydoodley at 1:50 PM on April 23, 2010 [4 favorites]

immlass wrote sonitohito, I notice that you have nothing to say about the idea that the ethics of the researchers bring their work into question. Are you ceding that point or are you merely unwilling to address it?

I didn't think it was worth addressing because so far no one has established, to my satisfaction, that other than the researcher who stole medical records that there were any ethical violations.

If anyone is being condescending to the Havasupai I think its the people who assume they're so dumb that they didn't know what they were signing. I think they knew exactly what they were signing, because I don't think they're dumb.

toodleydoodley I utterly, completely, and with extreme prejudice reject your premise.

There is one reality. There is one truth. That reality and truth may not be the one currently believed by the researchers, I'll concede that. But I do know that, so far, every single time religion and science have come into conflict over the nature of truth and reality science has been the victor.

If any individual chooses to reject reality, to claim that truth is falsehood, that's their concern. It is futile to try to convince a religion besotted individual that they are wrong, I've talked to way too many Creationists to think I've got a chance of convincing them of anything. But that doesn't make them less objectively wrong, nor does it mean we have to let them stand in the way of truth. If they want to clap their hands over their ears and sing "lalalala" that's their right, we live in a free society. But it isn't their right to silence the truth, nor to impede research.

KathrynT wrote And here's another: If that consent was truly that broad, why did the grad student who presented research involving the Havasupai samples have to redact that segment from his eventual research after the question of permission was raised?

Because casually religious people are easily manipulated by more hardcore religious people?

We don't know what happened. We either have to assume that Dr. Markow is, at absolute best, a lying fraud, or we have to assume that there are complex and confusing forces at work.

I think it'd be easy for casually religious Havasupai, people seeing that their isolation and lack of genetic diversity has produced a veritable plague of diabetes, may well have said to themselves "yeah, blood is holy and all that but fuck it, maybe she can help and I really don't give a damn if people do research on my blood".

Then, decades later, they've either become more religious than they once were, or a charismatic preacher type has stirred up a revival, or something of the sort. The research didn't produce any help for their diabetes problem, they're feeling somewhat justifiably burned, and its easier to say "we were fooled by an evil white person" than it is to say "I just didn't care much about the whole 'blood is holy' bit".

It saves face, it helps push tribal unity, it might even get you some bucks, and when you're dirt poor anything that might get you bucks is tempting. Admitting that you knew perfectly well what the consent forms implied might get you blackballed, and anyway you're feeling more religious now and more worried that maybe blood really is holy. So you say the evil white scientists lied to you and abused you.

I don't know if that's what happened, or if its total bullshit.

The problem is that its also plausible.

We know that Markow tried to make the forms understandable, that she had the help of English speaking Havasupai, etc. What else should she have done?
posted by sotonohito at 3:02 PM on April 23, 2010

If they want to clap their hands over their ears and sing "lalalala" that's their right, we live in a free society. But it isn't their right to silence the truth, nor to impede research.

sonohito, my point is we (USians and Havasupai) don't exactly live in the same society. so the tribe's agreement with ASU was kind of a diplomatic contract, from people of one country to another. I think people on both sides made some unhelpful or incorrect assumptions, but basically I don't think the researchers and Havasupai were thinking from the same frameset of law and culture.
posted by toodleydoodley at 3:18 PM on April 23, 2010

What else should she have done?

NOT instructed her assistant to lie to them about the purpose the blood was gonna be put to? Just for a start.

Or, perhaps, given them documents to sign in their first language. Or ensured that the oral explanation she gave them was materially similar to the written documents. Or not had her assistant freaking STEAL confidential medical records. Frankly, if she'd done ANY of those, it would be a good step.
posted by KathrynT at 3:21 PM on April 23, 2010

"One of the main concerns of the tribe was, why did this horrible epidemic of diabetes start in the 1960s? It was bad enough that dozens of tribe members were getting their limbs amputated. That was why they wanted the research in the first place. But at the end of the NYT article it says:

Many members are still suffering from diabetes and say they were never told if researchers had learned anything that could help them.

If I were Havasupai, that would piss me off. I can understand why Marko et al. would want to use the DNA to research other things, but that shouldn't make them lose track of their stated original goal."

Marko's original research showed that the known genetic markers which predispose the Pima peoples to diabetes are not in the Havasupai, sadly showing that the Havasupai are unlikely to benefit from the large amount of work done elucidating things like why the Pima used to use Federally provided powdered milk to make baseball diamonds. While unfortunate, this is not Marko's fault. That the results of the study done on genetic relatedness of the Havasupai to their neighbors happened to conflict with Havasupai traditions is also not Marko's fault.

However, that Marko both used and authorized the use of Havasupai samples for research that she did not bother to obtain the informed consent of the community for, much less each individual who gave blood, is damn well her fault. That Marko's lab failed to communicate the extent of their intentions with the blood samples is their fault. That Marko's lab got caught in a lie that was only revealed when members of the community happened to be around for a presentation is newsworthy, but that as a result of the lie the lab was forced to steal medical records to get meaningful data should prompt funding sanctions and potentially jail time and that they thought they could get away with it because the fucked up with a vulnerable population needs to draw the strong condemnation it has been.
posted by Blasdelb at 3:30 PM on April 23, 2010 [2 favorites]

And also, you keep going on about the medical records being "the only ethical violation." Well, it was committed at the instruction of the principal investigator on the project, and even if that WERE the only ethical violation, that would frankly be enough to trigger a settlement like this. Why do you think it isn't?
posted by KathrynT at 3:30 PM on April 23, 2010

If you want to get a sense of the legal bases for why we need all these ethical guidelines for research, a copy of the Arizona Court of Appeals decision on the case here. That decision is focused on the procedural issues, particularly administrative claim notice issue, not the underlying legal issues of invasion of privacy in the case. However, if you want to get a better sense of the Tribe's claims and summary of applicable Ninth Circuit caselaw governing privacy interests in context of research on human samples, start at paragraph 43 on page 31.

The bottom line is this: The Ninth Circuit is clear that a individual maintains a privacy interest in his own blood, and that intrusion upon that interest, even in cases involving informed consent, creates a cognizable injury. The above debate seems focused on the value of that injury, and more specifically, whether the value of an intangible invasion of privacy outweighs the value of science. Regardless of who we are or what our cultural background is, or regardless of how you characterize the ensuing suffering from the invasion of a privacy interest (conflicts with an individual's religious belief, conflicts with an individual cultural beliefs in national origin, embarrasses an individual by revealing a history of family inbreeding, or just a plain old fashioned concern for others being able to investigate an individual under false pretenses through a blood sample given them) I think we all ought to be cautious about setting up a debate that minimizes and/or subsumes our interest in our privacy rights to scientific research and "the greater good", as history demonstrates that can lead us down some pretty dangerous paths.
posted by Dr. Zira at 3:57 PM on April 23, 2010 [3 favorites]

so far no one has established, to my satisfaction, that other than the researcher who stole medical records that there were any ethical violations

But once we've established that the researchers stole the medical records (and did not report it, which is a separate violation), you still believe the researchers when they tell one story about what they told the Havasupai and the Havasupai tell another? That's what I'm getting at when I say researchers forfeit their credibility when they behave unethically.
posted by immlass at 4:06 PM on April 23, 2010

If anyone is being condescending to the Havasupai I think its the people who assume they're so dumb that they didn't know what they were signing. I think they knew exactly what they were signing, because I don't think they're dumb.

You're the only one suggesting that they might be "dumb." Other people only noted that many are not native English speakers. That you would equate these...

More to the point, sotonohito, lots and lots of research on human subjects gets done every year that clearly explains the goals of the research and how the research will be used, thoroughly discusses any anonymizing that will happen and at what level, and so on, and squillions of people actually give their informed consent. Informed consent is, in practice, not an impediment to getting science done.

Fucking around with people's consent, on the other hand, does make it hard to get science done.
posted by ROU_Xenophobe at 5:19 PM on April 23, 2010 [2 favorites]

Refusing to allow your own bodily fluids to be used for unconsented research, for whatever reason, is not imposing your religion on anyone else. It's claiming the right to practice yours. And yes, as both a sovereign nation and community of American citizens, the Havasupai are simply and clearly in the right here, so all the sturm and drang is moot. They won the case. The question of who's right has been decided.
posted by fourcheesemac at 6:04 PM on April 23, 2010