University pays damages to Indian tribe for alleged misuse of DNA

| 27 Comments

The New York Times reported a week or so ago that Arizona State University had paid damages to an Indian tribe for misuse of DNA that had been collected by a University researcher (here, with further analysis here). The tribe claimed that the researcher, Therese Markow, had obtained permission to use the DNA for one purpose but then used it for other purposes. That is, she had not obtained informed consent for wider-ranging research than the original research, which was to study diabetes among the members of the tribe. The Times did not give enough information about the consent given by the Indians to allow a judgment as to whether Professor Markow acted unethically, but she insists that she did not, in part because it is impossible to tell in advance the direction of a research project. Indeed, it is easy to conjecture that the University settled the suit because contesting it would damage its image.

One of the issues that rankled the tribe was that the DNA was used to cast doubt on their creation myth. Forgive me, but their creation myth is as obviously wrong as the more-widespread creation myth of many Biblical literalists. It needs to have doubt cast upon it.

Although The Native American Graves Protection and Repatriation Act was not a factor in the lawsuit, the case reminds me of nothing more than that of Kennewick Man (see also here). In that case, an Indian tribe stymied the efforts of anthropologists to study a fascinating fossil that had been discovered in the Pacific Northwest and at least appeared not to have Indian features. In the end, the Army Corps of Engineers destroyed the archaeological site.

27 Comments

“It hurts the elders who have been telling these stories to our grandchildren.”

And that’s what you get for _making up stories and propagating them to children_. When the truth is outed, so are you.

I am largely sympathetic to this scientist. And I understand from experience that research changes direction. However, it was her responsibility to get permission for the new direction. These were the conditions under which she got the DNA. Be it human research restrictions, property access restrictions, or whatever scientists are expected to work with in the laws and guidelines of our society.

The Kennewick man is a different case, because the land was owned by the Army Corps. In that case you had native tribes trying to claim ownership due to an unproven (and highly dubious) claim of ancestry. The natives are trying to use the law to take property from the Army Corps (and hence the American people). In this case, “ownership” is clear. You had tribe members who gave up their DNA under very specific conditions.

This sounds like breach of contract to me.

Walker wrote:

“This sounds like breach of contract to me.”

Yes, it certainly does. However, the specifics of the case and the exact wording of the contract will be very important here. If, for example, the DNA was collected to study the allele frequency of the disease allele and that data could also be used to infer phylogenetic relationships, then that would seem to be within the scope of the contract. If, on the other hand, other markers were used to infer ancestry, then that definitely should have been included for full disclosure, since it was obviously one of the aims of the study from the start.

One certainly should be respectful of the beliefs of others when using them as test subjects. However, when those beliefs happen to be at odds with the findings of science, then reality should take precedence. Perhaps more details will be forthcoming.

There are a number of issues here.

1. Scientific Ethics and full informed consent: If the members of the tribe did not fully understand the implications of the agreement, then they were used improperly as test subjects. Whether their beliefs are rational or irrational is not at issue-you have the right to refuse to participate in a study for any reason you choose;

2. There is a long history of abuse of Native Peoples by people of European descent, including by natural and social scientists (before you jump me, I’m not claiming that science is inherently abusive-I’m saying that past practices did not live up to the ethical standards of today and this has created deep mistrust);

3. An important component of anthropology is understanding the emic world views of people you study. What happens when that emic view comes into conflict with the etic view is a complex issue. But we aren’t talking about what gets taught in the local school (where there is a long, longh history of abuse and cultural destruction of native people’s traditions)-we’re talking about whether or not people can or should be manipulated into participating in studies that conflict with their beliefs.

If we want the current genetic research that is being done (which I happen to think is fascinating and immensely important) to be successful, we will need to gain the confidence of the test subjects.

Ahem. It’s Arizona State University not University of Arizona.

Am relieved to hear this:

John Lynch said:

Ahem. It’s Arizona State University not University of Arizona.

It’s hard for me to imagine anyone at the University of Arizona (which is in Tucson, not Tempe, the home of ASU) would do this, but I am saying this for merely sentimental reasons (having earned a graduate degree there).

Ahem. It’s Arizona State University not University of Arizona.

Yikes! Fixed it – thanks.

Should not be interpreted as an endorsement of Mr. Kwok’s claim, however.

Nor did I imply it as such:

Matt Young said:

Ahem. It’s Arizona State University not University of Arizona.

Yikes! Fixed it – thanks.

Should not be interpreted as an endorsement of Mr. Kwok’s claim, however.

However, I will note that, in the past, the University of Arizona has gone to great lengths in consulting with Native American peoples, especially since it has a notable graduate program in Native American Studies. Really for that reason alone, I would think any University of Arixona geneticist (or other molecular biologist) who have exercised substantial caution and done a superlative job of obtaining consent from the tribe(s) in question merely to assure IRBs assoociated with such studies as well as the tribe(s) in question that the study was quite sound, from a medical and scientific ethics perspective.

There are many delicate aspects to this case, but here is an interesting article:

http://www.phoenixnewtimes.com/2004[…]dian-givers/

Some very interesting bits from Markow’s graduate student, Chris Armstrong. Seems there is some reason to question whether there was actually informed consent.

My beliefs are offended by the actions of the University in settling this. Perhaps I should sue and claim some obscure religious belief that implies bad PR or possibly even violent retribution. Seems to be the way to go to get what you want.

Militant Science!

Is John Kwok God?

It would explain a lot.

Just to be very clear: when looking for genetic associations with disease, it is necessary to understand the genetic history of a population. That way false positives can be reduced. Even if tribe members had understood this, they might not have understood that their blood would tell a different story than their grandparents.

Does informed consent require people to understand that their creation stories are likely to be proved wrong?

Not by any stretch of mine - or for that matter anyone’s - I hope:

Dornier Pfeil said:

Is John Kwok God?

It would explain a lot.

With the University of Arizona’s case, since it is recognized as Arizona’s “flagship” university (no offense intended to John Lynch, or others, but I believe that is how the Arizona Board of Regents still regards it), they would have been especially careful.

I omitted the word imagination as in.…

Not by any stretch of mine - or for that matter anyone’s - imagination I hope:

John Kwok said:

Not by any stretch of mine - or for that matter anyone’s - I hope:

Dornier Pfeil said:

Is John Kwok God?

It would explain a lot.

With the University of Arizona’s case, since it is recognized as Arizona’s “flagship” university (no offense intended to John Lynch, or others, but I believe that is how the Arizona Board of Regents still regards it), they would have been especially careful.

http://www.phoenixnewtimes.com/2004[…]dian-givers/

Some very interesting bits from Markow’s graduate student, Chris Armstrong. Seems there is some reason to question whether there was actually informed consent.

Many thanks for the link! I did not have time to go much past The Times articles. Page 4 of Rubin’s article certainly suggests that there was not informed consent for anything but a diabetes study.

Does informed consent require people to understand that their creation stories are likely to be proved wrong?

That is, of course, a rhetorical question. But it is at least arguable that consent was not given for the research that led to that conclusion.

Matt Young said:

That is, of course, a rhetorical question. But it is at least arguable that consent was not given for the research that led to that conclusion.

I don’t see it as rhetorical. We know people don’t understand science. We know that people expect science (and education) to simply confirm what they already believe. Only a small set of people get excited about learning that the world does not work the way they thought.

Do subjects have to understand that science is not limited by their imaginations? Do scientists have to explain their entire methodology to subject, and the return and get new authorization if they have to change the methodology? Is permission require to publish an intermediate step of the analysis, one for which the connection to the endpoint is not obvious to the subjects?

I don’t see it as rhetorical. We know people don’t understand science. We know that people expect science (and education) to simply confirm what they already believe. Only a small set of people get excited about learning that the world does not work the way they thought.

Do subjects have to understand that science is not limited by their imaginations? Do scientists have to explain their entire methodology to subject, and the return and get new authorization if they have to change the methodology? Is permission require to publish an intermediate step of the analysis, one for which the connection to the endpoint is not obvious to the subjects?

People certainly do not have the right to give permission only if the results will be to their liking, and clearly they can’t tell you that you may use the results only if they come out one way, not the other. The origin myth notwithstanding, however, I think the real question is not the result, but whether the researchers used the samples for a purpose other than that for which they got consent. The second question, I think, is whether such use would have been ethical.

Some of you may not have much of a positive perspective on the role of mythology to social evolution, but anthropological evolution is tied to its stories, and even the specific origin stories linked to a group that has a positive perspective on genetic studies and evolution (they believe it exists, for example). In any case, there is argued to be a positive connection in societal collectivism and their stories, which are mythic by nature, and you can tell this whenever you read to your children in kindergarten or the first few grades of primary school. Children BELIEVE “Where the Wild Things Are” as they used to BELIEVE in “Mighty Morphin’ Power Rangers” and “Transformers.”

Social mythology is, in a very real mechanism in anthropological evolution. Some of you may want to keep this in mind.

While this doesn’t touch on creationism it does touch on a point. What possible harm could be done to this DNA by the researcher? I smell these indians just saw a chance to get money. The universities today are dominated by identity interests and passions and so could only give in. perhaps they sincerely think they should but I got a hunch it ain’t so. These tribes gain from America and so should be a part of the team. No one else would mind DNA being used for research. Science heals them and so they should not get in the way. It gives them a bad name to those who know the story.

Clearly you’ve just demonstrated how ignorant you are with respect to how IRBs (Instiutional Review Boards) work and why, when working with human subjects, it is necessary to obtain consent from study participants, merely to safeguard against any potential legal problems as this thread has discussed:

Robert Byers said:

While this doesn’t touch on creationism it does touch on a point. What possible harm could be done to this DNA by the researcher? I smell these indians just saw a chance to get money. The universities today are dominated by identity interests and passions and so could only give in. perhaps they sincerely think they should but I got a hunch it ain’t so. These tribes gain from America and so should be a part of the team. No one else would mind DNA being used for research. Science heals them and so they should not get in the way. It gives them a bad name to those who know the story.

You’re either socially immature or have some pathological need of posting breathtakingly innane comments (or more likely both) at each and every PT thread that interests you. One could hope that maybe you’d learn something finally about science, but I think, in your case, we would have to wait for the rest of eternity.

John Kwok said:

Clearly you’ve just demonstrated how ignorant you are with respect to how IRBs (Instiutional Review Boards) work and why, when working with human subjects, it is necessary to obtain consent from study participants, merely to safeguard against any potential legal problems as this thread has discussed:

Robert Byers said:

While this doesn’t touch on creationism it does touch on a point. What possible harm could be done to this DNA by the researcher? I smell these indians just saw a chance to get money. The universities today are dominated by identity interests and passions and so could only give in. perhaps they sincerely think they should but I got a hunch it ain’t so. These tribes gain from America and so should be a part of the team. No one else would mind DNA being used for research. Science heals them and so they should not get in the way. It gives them a bad name to those who know the story.

You’re either socially immature or have some pathological need of posting breathtakingly innane comments (or more likely both) at each and every PT thread that interests you. One could hope that maybe you’d learn something finally about science, but I think, in your case, we would have to wait for the rest of eternity.

However, this does mark the first time that I’m aware of that Robby actually said that science was good.

Alex H said: However, this does mark the first time that I’m aware of that Robby actually said that science was good.

Maybe, but only in the context of complete idiocy: implying that the equivalent of giving a blood sample will harm their DNA? Check. Completely ignoring the ethical issue of consent? Check. Ad Hominem attack? Check.

Or maybe he’s just crazy like a fox and is setting up a ‘majority-rules’ argument so that he can then apply it to the teaching of creationism.

Jamie wrote:

“Social mythology is, in a very real mechanism in anthropological evolution. Some of you may want to keep this in mind.”

I think we are keeping this in mind. That is why informed consent is an issue here. The DNA was not harmed, the mythology is what ultimately suffered.

Now if they really did give consent for the DNA to be used to determine ancestry, then they have no recourse. They should try to be more careful next time. Of course, they could just not read the article, just as they apparently don’t read any other articles that demonstrate that the mythology is scientifically inaccurate.

If they did not actually give consent for the DNA to be used to determine ancestry, then I guess they could sue for breach of contract. In this case, the university, for whatever reason, choose to settle. I guess now the article will have to be unpublished, which should make it easier for them not to read it.

Of course if they choose not to read the paper, for whatever reason, then they will not get any benefit from the research. The results could help to inform public health policies and aid in the design of screening programs that could prevent death and disease. They are certainly entitled to their own religious beliefs, even if those beliefs are contrary to reality. The price that they have to pay for those beliefs will no doubt be exacted by their own deity. I wonder what other realities their mythology requires them to deny?

Think yours is the more astute analysis of Byers’s repeatably constant instances of a most acute absence of profundity in his peculiar online verbal diarrhea:

eric said:

Alex H said: However, this does mark the first time that I’m aware of that Robby actually said that science was good.

Maybe, but only in the context of complete idiocy: implying that the equivalent of giving a blood sample will harm their DNA? Check. Completely ignoring the ethical issue of consent? Check. Ad Hominem attack? Check.

Or maybe he’s just crazy like a fox and is setting up a ‘majority-rules’ argument so that he can then apply it to the teaching of creationism.

eric said:

Alex H said: However, this does mark the first time that I’m aware of that Robby actually said that science was good.

Maybe, but only in the context of complete idiocy: implying that the equivalent of giving a blood sample will harm their DNA? Check. Completely ignoring the ethical issue of consent? Check. Ad Hominem attack? Check.

Or maybe he’s just crazy like a fox and is setting up a ‘majority-rules’ argument so that he can then apply it to the teaching of creationism.

I don’t think he’s smart enough to come up with the second option.

I don’t Booby has any semblance of intelligence that demonstrates he could consider the second option:

Alex H said:

eric said:

Alex H said: However, this does mark the first time that I’m aware of that Robby actually said that science was good.

Maybe, but only in the context of complete idiocy: implying that the equivalent of giving a blood sample will harm their DNA? Check. Completely ignoring the ethical issue of consent? Check. Ad Hominem attack? Check.

Or maybe he’s just crazy like a fox and is setting up a ‘majority-rules’ argument so that he can then apply it to the teaching of creationism.

I don’t think he’s smart enough to come up with the second option.

But, as I said earlier, eric’s analysis seems to be on the mark for our most bizarre, quite delusional, Canadian “friend”.

As Chip pointed out, there is a long history of Native Americans being mistreated and outright cheated by a variety of government agencies, including anthropologists and archaeologists. That reality means that any time someone wishes to work with native peoples they have to be certain to fully explain the ramifications and potential outcomes of their research. Again, as Chip pointed out and others have mentioned, subjects in a study have to be made as fully aware of the potential uses of the material being requested to truly provide consent. If a study leads to further research in an area not covered by the original agreement, a second attempt should be made to obtain fully informed consent. There are museums, libraries and archives all over the country containing Native American artifacts, remains, ethnographies, and other materials that were obtained under false pretenses or outright stolen from these people. Expect native peoples to be more suspicious and less trusting of researchers because of the actions of those who precede you.

———- Bryan,

Slight problem with your comment in #1. I agree it is simply a myth, just like Christianity or any other religious system, but I would still be opposed to someone using samples taken to study a medical issue being used to potentially disprove those myths as well.

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