University pays damages to Indian tribe for alleged misuse of DNA
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
Bryan · 26 April 2010
“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.
Walker · 26 April 2010
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.
DS · 26 April 2010
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.
Chip Poirot · 26 April 2010
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.
John Lynch · 26 April 2010
Ahem. It's Arizona State University not University of Arizona.
John Kwok · 26 April 2010
Matt Young · 26 April 2010
John Kwok · 26 April 2010
Douglas Theobald · 26 April 2010
There are many delicate aspects to this case, but here is an interesting article:
http://www.phoenixnewtimes.com/2004-05-27/news/indian-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.
Natman · 26 April 2010
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!
Dornier Pfeil · 26 April 2010
Is John Kwok God?
It would explain a lot.
Reed A. Cartwright · 26 April 2010
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?
John Kwok · 26 April 2010
John Kwok · 26 April 2010
Matt Young · 26 April 2010
Reed A. Cartwright · 26 April 2010
Matt Young · 26 April 2010
Jaime A. Headden · 26 April 2010
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.
Robert Byers · 27 April 2010
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.
John Kwok · 28 April 2010
Alex H · 29 April 2010
eric · 29 April 2010
DS · 29 April 2010
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?
John Kwok · 29 April 2010
Alex H · 29 April 2010
John Kwok · 29 April 2010
dogmeat · 5 May 2010
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.
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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.