Amerindian DNA Sells for 55 Dollars

Amerindian DNA Sells for 55 Dollars

by Dr. Hsien-Hsien Lei
Posted June 28, 2007 in DNA Around the World, DNA in General

yagua amazon indiansGoing once. Going twice. Sold! DNA for $55.*

The Karitiana Indians of the Amazon feel as if part of their heritage has been auctioned off by researchers who misled them. They first gave their blood in the 1970’s after making contact with “the outside world.” In 1996, they again gave samples of their blood in exchange for medicine, which the Karitiana Indians claim they never received. Similar to the American Indians who were studied to investigate the relationship between the MAOA gene, childhood sexual abuse, and alcoholism, Amazonian Indians live in closed communities where their lifestyle, living environment, and disease inheritance patterns make it easier to conduct genetic studies.

But the extent to which their genetic data would be used was not clear to the Karitiana Indians when they donated their blood. To their shock and anger, they recently discovered that their DNA is now being sold via the Coriell Institute for Medical Research which is funded by the US National Institutes of Health and other givernment agencies. You can obtain a listing of 25 cell cultures from the Karitiana Indian people with details such as race, age, gender, and disease status. A 1.0 ml cell culture costs $85 while 0.05 mg of DNA costs $55.

The situation is not as sinister as it seems, however. The Corielle Institute sells specimens only to scientists who sign an assurance form agreeing to guidelines that specify:

  1. That the biomaterials will be used in compliance with all regulations protecting human subjects.
  2. That the biomaterials or any products derived from them will not be commercialized.
  3. That the biomaterials will not be distributed to a third party (that the researcher will not “share” with a colleague) without authorization by the Coriell Institute for Medical Research as agent for the National Institute of General Medical Sciences.

The Karitiana Indians are not satisfied and along with other Amerindian groups, they claim that selling or using their DNA in unapproved ways is biopiracy. For example, many indigenous groups have expressed their distrust of the National Geographic’s Genographic Project, including the Maori of New Zealand and Alaska natives who want National Geographic to stop “sucking indigenous blood.”

The United Nations Permanent Forum on Indigenous Issues recommended the halt of The Genographic Project in May 2006. The Project is practically at a standstill anyway since almost every federally recognized tribe in North America is refusing to participate. Clearly, scientists and others asking indigenous populations to donate biological samples need to do a better of job of communicating the overarching goals and benefits such studies can achieve.

Judith Greenberg, director of genetics and developmental biology at the National Institute of General Medical Sciences:

This is sort of a balancing act. We don’t want to do something that makes a whole tribe or people unhappy or angry. On the other hand, the scientific community is using these samples, which were accepted and maintained under perfectly legitimate procedures, for the benefit of mankind.

Legitimate for us maybe, but not necessarily for the Karitiana people.

How do you think indigenous populations should be compensated for their participation in genetic studies?

*(Does this answer your question, Berci?)

Scotland on Sunday, June 23, 2007

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(17 comments)


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17 Comments

Comment by Berci Meskó

Nice post! :)

My first question was: Should they be compensated at all? Then I realized how I’d feel in the same case. This is MY genetic code…

Anyway, giving them medical help would be enough. What do you think?

Comment by Hsien

Berci, I agree that it doesn’t necessarily have to be compensation in money but it’s always good policy to help one another whenever we can. In this case, perhaps basic needs and education could be provided at least in part by the researchers and the governments involved.

 
 
Comment by Uosos

Of course they should be compensated. If the samples are worth $85, they’re worth $85 to the people who provide the samples. Why are the institutions making money off the samples if they were obtained for free? the Why don’t they ask a bunch of suburban white families to contribute their genes for free? Vultures. They’re just taking advantage of unsophisticated people.

That nonsense about benefiting mankind is a crock. Like the US govt gives a crap about mankind. This is about pharmaceuticals. It’s amazing that after everything that has gone down people are still so unabashed about about point blank theft and exploitation of American Indians. Thank goodness they can see through it.

Comment by Hsien

Uosos,

Thanks for the comment! Part of the fee for the samples must go towards their storage and maintenance so I don’t know if they make a profit if any off of the sales.

But you make a good point about asking suburban white families and guess what? That’s what researchers do every day! They recruit study participants from all ethnicities and socioeconomic status so we (and I still count myself among them) can conduct studies that produce results which can be generalized to the population.

As for benefiting society, certainly public health professionals and other scientists care a great deal. The US govt as an institution cares as well but there are many situations which could have been handled better esp. with the benefit of hindsight and this may well be one of those situations.

 
 
Comment by Jason Bobe Subscribed to comments via email

Great post Hsien. I think it all depends on what they consented to originally. Did they consent to have their blood drawn and cell lines made/stored/distributed? Did they consent to a specific study or all future research? Historically, projects that don’t work these issues out from the get-go have problems
like this, and for good reason. So, the question I’m curious about is: Who changed their mind about the use of the samples? The researchers? Or the individuals?

Comment by Hsien

Hi Jason, I’m guessing the researchers had a good idea what they were going to do with the samples but didn’t communicate it well to the study participants. It’s a tricky situation, though, when the participants are not in tune with modern scientific practices. But now the Amerindians are educating themselves on the issue of research and biopiracy, so what’s the best way forward? They’re doing a good job of raising a ruckus but I hope they’re also working on productive ways to benefit themselves as well as science.

 
 
Comment by David Chen

If there was no written contract restricting the future “auctioning” of their DNA, then , legally, they cannot request compensation. However, they might was to pursue some other recourse to address a perceived injustice.

This kind of thing was bound to happen. One cannot fault the people who are profiting from this unless they have violated some contract and/or established law. It might be construed as unethical, but then the list for this kind thing would be immeasurably long.

As a whole, I do not think anyone should be compensated for their participation in genetic studies. No one forced them to provide samples. If they had been forced, that would be a completely different issue.

I think this article clearly shows a bias in favor of the Amerindians by phrasing the question the way you did. If you are going to try to be impartial and present a topic in an objective manner, you should abstain from using leading questions. So much PC on the Internet. Wish I could be compensated in someway for having to confront it on a daily basis both in and out of cyberspace. Only a wish.

Comment by Hsien

Hi David,

Thanks for the comment! Given the evidence, I admit to being biased and as blogging (and much of main stream media) is about opinion, I stand by the tone of my piece. The issue perhaps is whether there was any way to really inform the Amerindians when their knowledge of the outside world was so limited. I do think they should be compensated in some way not necessarily in dollars and cents, but perhaps in education to help them gain knowledge and understanding of why their blood and DNA were taken and how it’s being used to improve medical care and humanity in general.

I was brought up on PC and can’t say that it’s been a completely bad thing, but I can understand your point. ;)

 
 

[...] up on yesterday’s discussion of the sale (or biopiracy) of Amerindian DNA for research purposes, National Geographic’s Genographic Project has published the first [...]

 
Comment by David Bradley

I covered the biopiracy issue a few years back for The Alchemist on ChemWeb with regard to the Neem tree, but this takes it to the next level where companies are not simply plundering natural sources they are plundering the people themselves

db

Comment by Hsien

“plundering” – Talk about fighting words! Depends on the perspective, doesn’t it….

 
 
Comment by Hsien

As always, anthropologist John Hawks has some insightful comments to say on this subject.

The blood that would not rest

 
Comment by suberite Subscribed to comments via email

We all have a tendency to simplify the big questions, and from pedestrian reasoning, try and squish things into diminutive compartments. Sound bite; two minutes 25 words or less- explain whether it’s wrong or right. Good or Evil. (Capitol punishment, euthanasia, bio-piracy, etc.)
It’s true, America (the New World. It used to be Europe that did the exploiting. Before that, North Africa) has exploited the North American Indian (and a long list of everybody else). But I think we make a big mistake when we say the US government this, and the Pharmaceutical companies that. You or I may not work in the US government or at a Pharmaceutical company, but maybe our Aunt does, or our children’s mate’s brother’s friend’s father. And anyway, it doesn’t matter if we work there or not. In some respect, we are Them. We buy and use the products. Pointe finale. We are all connected. Change can come only on an individual level. What’s missing from the equation? It’s not education, per se. Education sounds a little missionary to me. But what is missing is dialogue, discussion; Exchange of Ideas. Ask yourself this; what makes you the most upset? Is it that someone asked you for a favour and didn’t pay you back, or that someone asked you for something and later on you found out that it was being used differently but no one bothered to tell you? There is nothing worse than feeling used. If there is no hidden agenda, then the feelings of being used come from lack of communication. And Communication, my friends, is the biggest challenge in life. We get to practice with our parents and then our peers, later on with our children. We practice everyday with strangers and small time acquaintances.
It’s funny; I was going to enrol my father in the Genographic Project as a gift. I certainly wasn’t aware of any indigenous conflict. But you see, that’s the problem; why aren’t these issues addressed on their site? I’m not joking. I am serious. We do this sort of thing on a smaller scale in our own lives; we get into a pickle, and if no one is looking, we sweep it under the carpet before there is any dust.
Question: Do people think that Big Business and Big Government and Big Brother are the only groups who grapple with the concept of openness and honesty? Everybody grapples with this; everyone has a space to question themselves. Which leads to another big question: what can we live with and what can we not?

Comment by Hsien

Thank you for the thoughtful comment, suberite. I also feel uncomfortable pointing fingers especially when “big pharma” is often portrayed as being evil. I’m a former researcher and have worked for pharmaceutical companies and I have friends who are still working in the field. All of us want to improve people’s lives and I can’t think of a single one who’s deliberately being evil. Sometimes research goes the wrong way but hopefully institutional review boards (IRB’s) and ethics committees are comprised of a wide range of people who monitor each study carefully.

FYI, the Genographic Project addresses the issue of indigenous populations in their FAQ although I found it too nebulous to be satisfactory.

 
 
Comment by Noreen

Hmmm, I’m torn. On the one hand, science benefits us and I read that the sale of blood was to other scientists under strict guidelines and not for commerical purposes. That’s how our world works, unfortunately, our trades are conducted with money – even the most sacred. Medical doctors and mental health care professionals,for example, get paid money either by the government, or through private transactions. We walk a tricky line between need (money for our services to live) and greed (distortion of our services to community in the pursuit of money). Until we clean up our act spiritually, Traditionals who are trying to save their own people from our cultural distortions are not going to trust us or want to deal with us. And we can clean up our act if we make it a priority.

I also think that the scientists who originally collected that blood had an obligation to explain to their research subjects what would be done with the genetic material. That was unethical and usually there is an ethics board to hold people accountable for such a failure. Legal doesn’t make it right.

Unfortunately, the way it was handled by the scientists in question does smack of hangover colonialist attitudes – and science, like any of our other cultural institutions has been steeped in such attitudes and arrogant practices. Just look at how we put human remains and other animal species on display for our “education”. Yet we’d be horrified if someone stuck our dead relative in a museum (robbed from the grave) or stuffed our beloved “pet” dog or cat and put the carcass somewhere official for all to gawk at. Sometimes our most “respected” institutions don’t act all that respectable, when you consider the larger philosophical and ethical questions of privilege and entitlement.

I see though that I have to pay $100 to participate in the project (rather than be a paid subject) and I probably will do some form of testing, and likely the Genographic Project, because I have questions about my own genealogy, that I’d liked answered, so I personally need such information as the Project is seeking to create.

Cultural stories should be able to survive science and – again, depending on the intention of the scientists with the results – could enrich the understanding of those stories.

 

[...] at Eye on DNA, one of my most popular posts in recent weeks – Amerindian DNA Sells for 55 Dollars [...]

 

[...] 30, 2007 in DNA Around the World The Karitiana Indians of the Amazon aren’t the only ones offended by the sale of their DNA. The Cook Islands has declared that it will no longer be “the guinea pig of the South [...]

 

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