Wednesday, April 21, 2010

The Fierce Non-Controversy

In the 1960's and 70's, geneticist James Neel and anthropologist Napoleon Chagnon, and a team of others from the University of Michigan and South America, went to the Amazon rainforest to conduct biological and ethnographic studies of the Yanomami. This work launched Chagnon's career, and made him the most famous anthropologist of his era. The Yanomami were the subject of extensive, and world-leading ethnographic films by Tim Asch that have been seen on television and in classrooms the world over. If you've taken a cultural anthropology class in the last 40 years, you have probably read Chagnon's book, The Fierce People, and seen these films.

But Neel had a different purpose. Before embarking on this project, he had already been involved in studying the genetic aftermath of the atomic bombs in Japan, and he became interested in comparing mutation rates of relatively isolated, inbred peoples with those found in outbred populations. How does 'primitive' population structure relate to the amount of variation in the genome? How did our ancestors' populations get rid of harmful mutations? What, in fact, is their load of such mutations, given that they're not exposed to chemicals, radiation, and other mutagens to which we in industrial countries were so regularly exposed?

In fact, the work was initially funded by the Atomic Energy Commission, which also funded the work in Japan. That was during the scare about atomic testing and other exposures to radiation (including what is still controversial, medical x-rays). Survivors of the atomic bombings became unfortunate natural guinea pigs in studies of the effects of the radiation they had been exposed to.

In those days, it wasn't possible to look at DNA itself to identify mutations caused by radiation or other substances, but Neel's group collected hundreds of blood samples to look for protein variants that directly reflected genetic changes and could be identified by the technology then available. Papers showed little direct evidence of important differences between the 'aboriginal' cultures and those of us in industrial countries. In fact, while the Japanese survivors did (and do still) experience excess risk of cancer, there was basically no increase in detectable mutations. But the data were crude, so the Yanomami blood samples that had been collected were saved in case times would change and more genetic information could be gleaned from them -- which is what happened.

But before DNA analysis was possible, Neel retired, and decided to divide the remaining blood samples between 3 labs, including our lab here at Penn State because Ken had been a post-doc of Neel's in the 70's, doing demographic work with Yanomama birth and death data. The idea was that the recipients would be caretakers, and when the technology improved would do further analysis of these unique, never-to-be-repeated data.

One doctoral student here decided to work with these samples, asking genetic questions that hadn't been possible to answer in the pre-DNA days. But, just as he was finishing his work, a book was published that set the Anthropological world on its ears. That book was Darkness in El Dorado, by Patrick Tierney, a journalist with an interest in the aftermath of the work that was done in the Amazon years before.

He made some very inflammatory claims about how Chagnon and Neel had carried out their work decades before, most seriously accusing them of having deliberately spread measles throughout the area, to study the effects of the virus on a virgin population. There were other accusations as well, and the book set up an uproar in the field, launching investigations and email flame wars that went on for months. The book was rather irresponsible in its charges about these biomedical studies, and the most egregious accusations were easily dismissed without any question.

But, the book did lead to Brazilian anthropologists contacting the Yanomami and telling them that blood of their parents and grandparents was still being stored in freezers in the United States, and suggesting that profit was being made with the samples, and that they could ask for their return. Yanomami are culturally proscribed from even mentioning the dead by name, so to at least some people, the knowledge that the blood of their dead grandparents could still exist required that they ask for the return of these samples. Proper funereal rites were needed to put to rest the souls of the sampled individuals who were deceased.

When the request was made via the Brazilian government, Ken put a moratorium on the use of the samples, and readily agreed to return them. Ryk Ward (now deceased but one of those who collected the samples, and a longtime friend of Ken's) agreed, and he and Ken discussed ways to return them, even in person. We started preparing to return the blood. And then we waited, and waited, and waited.

It has been 8 years now since the return of these bloods was requested, and we're still waiting to hear from the Brazilian government as to when and where and how they should be sent. Brazilian lawyers and anthropologists and the embassy have contacted Ken over the years, but still with no definite information about the return.

One issue is that, as we do every sample that comes through our lab, we have treated these bloods as potentially biohazardous. Not because we know anything specific about these samples that would, after 50 years, make them still potentially harmful, but because we always err on the side of caution.  The samples have been deep-frozen so that some pathogens could in principle have survived.  Since we don't know what will be done with the bloods once they are back in Brazil, this is something that Ken has discussed with every official who contacts him about their return. We are currently still waiting to hear from the Brazilian embassy how best to ensure they are safe and delivered to the proper recipients in Brazil.

Meanwhile, in spite of the fact that this is a non-issue, as these bloods will be returned when the logistics are worked out, and that has always been true, agreed to by all those labs that currently house such samples, for years an American anthropologist has masterminded numerous online letter writing campaigns to stir up undergraduates who are not properly informed about what's been going on, to demand the repatriation of these bloods.

So, from time to time Ken hears from reporters at newspapers that are getting flooded with letters from students, asking what's going on. The office of the president of Penn State was once inundated with letters (said anthropologist spearheads all of this via an online course), so that the university lawyers got involved. This guy has been told over and over that there has been a moratorium on the bloods since 2002, and yet he still persists in accusing Ken of refusing to hand them over. You can see here that Ken has pretty much lost his patience with this man's demagoguery.

Apart from this, this story does raise a number of issues widely relevant more broadly, and legitimately, in Anthropology -- the bloods were collected in the days before today's kinds of informed consent (for whatever that's worth in such a setting), so there is no binding obligation to return them. Indeed, the samples were collected voluntarily, paid for by trade goods, and with explanations of the general objectives for their use (we weren't there so we can't comment on the details). There is no legal issue here -- the issues are ethical. Any research project using human subjects initiated today would include a clause in the consent form that allowed subjects to request to be withdrawn from the study at any time, and that's how Ken is treating this, and has been from the beginning. Even if most of the subjects are deceased, and it is their relatives, or even group members, who are demanding return, and even if this is to give a sense of justice after a lot of abuse of the Yanomami by the outside world having nothing to do with these blood samples.

Archaeology is confronted by this kind of situation all the time, with requests for repatriation of skeletal remains and artifacts. Who determines where they belong? And who decides whether they go back? Who has legal, and more importantly who has moral, claim to set the conditions for use or return?

In the case of the Brazilian Yanomami bloods, the group itself has decided, or at least representatives of the group. But each population in each country will have different criteria and different feelings. These Yanomami bloods will go back to Brazil for at least some kind of closure, whenever the Brazilian embassy gives us a time and a place to send them to. There might still be interesting things that could be learned from these samples, and such samples could not be collected again. But such is life.

The ethical issues involving a history of dominance and colonialism, power differentials between industrial states and indigenous peoples can be found on every continent. The details and political realities may differ, but there is much to think about by those who would like to do good science, but would also like to ensure that it's done ethically.

6 comments:

Henry Harpending said...

I think this is hilarious but I realize that I don't have to pay the electric bills for that freezer. Ryk Ward was in the same situation with specimens from some groups in the Pacific Northwest: they demanded the return of specimens, Ryk agreed, but no one would accept them back. Last I heard they were still at Oxford.

The real issue is to understand how the holier-than-thou huckster niche got established in our universities and how it is maintained. Unprincipled go-with-the-flow administrators and faculty are at fault: hard to blame it on anything else. Your story is funny but pales in comparison to the outrages of IRB culture.

Henry

Ken Weiss said...

Well, Henry, what you say is true. I know of a few cases where scientists did profit from such sample collection without adequate consent. But there's no doubt that universities are too risk averse to put up much resistance to demogoguic opposition. On the other hand, Tuskegee did happen.

In all of the anthropological cases I'm aware of, while professors built their careers on the backs, so to speak, of their study populations, this isn't the same as profiteering, and nobody got hurt by it that I know of. Accusations of misuse are, to my knowledge, scurrilous.

Ryk (may that great guy rest in peace!) and I talked about a return of Yanomami samples. While I think there was absolutely nothing unethical about their original collection, which was captured on film as clearly voluntary and well paid for, I do think that when people want them back they should get them, and I have to say that I don't think they should have to give a reason.

I just try to put myself in their position. I'm no where nearly the libertarian that you are, and I admit that I've never gone out raccoon hunting (firing from a drunken posture on the back porch), but even to my liberal eyes, the balance between legitimate subject protection and bureaucratic overkill is hard to maintain. And sometimes it really is enough to turn a person at least into a Republican!

Finally, I thought that ol' Rykiwoo had sent back the Canadian samples, but maybe he passed away first.

Ken

Henry Harpending said...

Can't disagree with you, but the situation is a bit more complex since people are not saying they want to withdraw permission, they are saying they want to withdraw their uncle's permission. One has to give a thought to, say, subject's grandchildren and what they might want. We can imagine some parents 50 years from now who need a tissue match for a kid but can't even get started looking because all those samples were thrown out.

BTW I sure you meant no libel, but only an ill-bred redneck would shoot a drunken racoon. It wouldn't be sporting.

HCH

Ken Weiss said...

No, it was not the raccoon that was drunk, as I remember you telling it, but that's beyond the scope of this blog.

The 'uncle' issue is certainly legitimate, in the same sense of limited liability in other contexts, and I agree up to a point.

Here, the IDs of the individuals can't be matched to the samples by any living scientist, and some of the sampled Yanomami are still alive, one of whom speaks in a film requesting return of samples.

Also, things are a bit different in a culture of that type that works more by kin group or village headman-based decision-making etc. It may be hard to recognize from our individual-based society, and it may be different in the Khoisan--you would know, but I wouldn't.

Finally, there is the general ethics issue about power differentials, and here I'd have to say that ethical views become more subjective. Of course, once legal challenges about the samples had been raised, such things all became moot because nobody wanted a big legal to-do over this, which would be to nobody's credit.

I would like to say again, however, that I think there was nothing whatever devious or unethical in the collection and use of these samples. The charges about the ethics of the biomedical studies in the Yanomami are totally groundless and as without foundation as your denying the raccoon-shooting episodes in your back-porch history.

Anne Buchanan said...

And I would just add that the 'uncle' issue is certainly a legitimate one, and it's possible in theory that old samples would be useful in searches for tissue matches and so on, but that that's a pretty unlikely scenario with anthropological samples like the Yanomama bloods.

Ken Weiss said...

The DNA could be extracted and completely sequenced, and much could be inferred--such as actual, relative to classificatory or cultural, kinship relationships within and among villages.

But that might be rather useless now because of loss of context. Napoleon Chagnon is still with us, but the DNA-sample records would make it problematic to identify who is who relative to cultural aspects.

Neel was right decades ago that comparable data would be almost, or even literally impossible to collect again, anywhere in the world. In any case, the importance of the questions relative to other kinds of data, and the cost, would probably make it not really worth attempting, interesting as it might be in many ways.