The blood that would not rest

The International Herald Tribune is running a story by Larry Rohter about the dispute over rights to blood samples taken from Brazil's Karitiana tribe more than 10 years ago:

"We were duped, lied to and exploited," Renato Karitiana, the leader of the tribal association, said in an interview here on the tribe's reservation in the western Amazon, where 313 Karitiana eke out a living by farming, fishing and hunting. "Those contacts have been very injurious to us, and have spoiled our attitude toward medicine and science."
Two other Brazilian tribal peoples complain of similar experiences and say they are also seeking to stop the distribution of their blood and DNA by Coriell Cell Repositories, a nonprofit group based in Camden, New Jersey. They are the Suruí people, whose homeland is just south of here, and the Yanomami, who live on the Brazil-Venezuela border.

I found the story after reading Hsien-Hsien Lei's post on the subject, which also includes a lot of detail. This is one of the topics that I return to every year in my anthropological genetics course.

This particular example is the first I've seen dealing with immortalized cell lines -- a concept that causes a special problem for some groups:

"We don't want that blood back, because it is contaminated now," said Orlando Karitiana, 34, a tribal leader. "But these blood samples are valuable in your technology, and we think that every family that was tricked into giving blood should benefit."
The religions of some other tribal groups, however, regard human tissue as important or nearly sacred. The Yanomami, for example, say they want the blood samples returned to them intact.
"A soul can only be at rest after the entire body is cremated," said Davi Yanomami, a leader of the group. "To have the blood of a dead person preserved and separated from the remainder of the body is simply unacceptable to us."

I have a lot of thoughts about this, which I see as a very complex interaction of traditional belief, modern science, and dueling economic systems. I'm going to jot down some of them, recognizing fully that some of the points are generalizations.

The economics of blood samples

One of the major flash points here is that Western societies have turned human tissues into a commodity. We have trouble with this commoditization ourselves -- a sticking point is the development of market solutions for organ donation. Many more people would donate organs and tissues if they were paid for them. Others would be insulted. Many donors now are insulted that anyone makes money on the donation process, including tissue banks, hospitals and doctors.

A similar, if smaller-scale, economic conflict affects tissue donation for research. Donate cells to a scientific researcher, and you are likely to have some good feelings. You have helped the research. The research might help someone else. But many people have a very different feeling upon finding out that their donated cells are being propagated and sold. Some people may feel anger because what they freely gave is not being freely used (they might like a GPL for blood). Others may feel deprived of a rightful share in the profits. These feelings may be exacerbated within societies where commoditization is an unfamiliar concept or is opposed by traditional economic relations. "Breaking even" or "selling at cost" are not universal concepts.

Indigenous people have been compensated in one way or another for blood samples. Often this compensation has included small payments, in other cases promises of medicines or long-term inclusion in health programs. Less often, researchers offer to train members of the group as research assistants. The Karitiana and Yanomamo cases are part of a broad debate about whether compensation offered in the past was enough. People who donated samples were not necessarily aware of how long the tissue or blood would be kept, or how long they would continue to be useful. Now that these samples have had useful lives of a dozen or more years, and have been propagated and sent to labs throughout the world, a sample can fairly be said to be a "gift that keeps on giving." From a purely economic standpoint is certainly logical to object that some kind of licensing arrangement with continuing payment or non-monetary returns would be more appropriate than a one-time payment. From a cross-cultural perspective, the simple conclusion is that an ongoing gift should evince ongoing reciprocation.

I should note that small-scale societies are no exception: Donors in large-scale societies also expect a long-term repayment for their tissues. But in most cases, donors accept in fulfillment of this obligation the long-term benefits of research, along with its potential to help other people if not directly benefiting the tissue donor. Such long-term benefits of research are much more diffuse when they occur halfway around the world, for people you never knew existed.

Channeling traditional governance

Another flash point is the concept of "community rights". Should payments or benefits of research be given to indigenous communities -- which means control by a few community leaders -- or should they be given directly to individuals? Should consent be a communal decision (again, in practical terms made by a small group of leaders) or an individual one?

If the head men condemn research, but the research payment amounts to a month of income for a woman's family, should she be able choose to participate anyway? Should reprisals against her be punished?

You can see the problem: many traditional communities are disintegrating. That disintegration is in the interest of some, and against the interests of others. Communities disintegrate faster when Western economic models and Scientists bearing payments and promises inevitably strengthen one side at the expense of the other.

NGOs representing the interests of the leaders of indigenous groups (and often, but not necessarily, the non-leaders) would find ways to stop the sampling, or to constrain the decision-making about sampling to traditional power structures. Their efforts have had some notable successes in preventing blood collection -- for example, here's a quote from Hsien-Hsien Lei:

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.

Since the aim of most of these geneticists is to study something about human history, there are few concrete goals and benefits beyond information. This is not out of scale to the cost to the individual, which is really just a blood sample. These projects are small. It is highly worthwhile for medical research to include a broad range of human variability from around the world, but it is hard to trace the benefit to any particular sample. So for the most part, both benefits and costs are small. Compare this to the large economic and political problems that may affect an indigenous group, and the issue of genetic sampling is like a leaf carried by a tornado.

Cell lines seem different

Cell lines seem like an especially odious intrusion on personhood. Someone takes blood from your veins, propagates it far from you in laboratories, and it remains alive long after your death. There is an obvious analogy with reproduction: a woman takes semen from the man, transforms it within her body into a child, and the child lives beyond either of them. Moreover, the scientists claim that the blood carries a mysterious knowledge of your ancestors. Or a healing power.

Reflecting on this, it is remarkable to me that blood and tissue donation have become so unremarkable in industrialized societies. Sure, people have very different attitudes toward responsibility and obligation, but I think this marks a huge success of a framework of knowledge about blood and cells. We view different tissues as intrinsically different in ways that preclude the confusion of germline legacy and somatic ephemera.

Still, people whose tissues are taken for research sometimes claim injuries, particularly on the basis that they did not understand what the tissues would be used for, or that someone would sell them. All this goes toward explaining why people might feel upset about "bloodnapping". No doubt there are other reasons, and different people -- even within a small group -- may have different feelings.

The next step: trace samples?

Here's an issue to think about: Nearly every week, television crime shows remind us that your DNA may be taken without your consent from objects that you have touched or hairs you have carelessly left behind. Further, it is routine to take DNA samples from wild animals by collecting feces and analyzing sloughed intestinal cells. In zoology this is called "noninvasive sampling." On CSI it's called "trace evidence."

Would such sampling of a village or town be approved by an ethics review board? As a practical technique, so far such sampling would be limited in its utility to a few genes and a single laboratory. As yet, found epithelial cells are not readily transformed into cell lines, so such small samples could not be readily shared.

Still, it is by no means inconceivable that a SNP panel or even a full genome might someday be taken from a small sample of cells. This would obviate cell lines and blood samples, eliminating some problems. But this technology might create other problems: imagine a world in which anyone can know any genetic information about anyone else by following them around with a swab and a hairbrush.

Now, sure, you can make yourself pretty conspicuous by following people around picking up small feces samples and taking them back to your field flash freezer. I'm thinking this is not a serious threat. But on the other hand, a researcher working with a confederate who owns a local cantina might have access to trace from many people as well as the capacity to store and transfer samples surreptitiously.

I raise the possibility merely to point out that the ethics of genetic sampling are going to become more difficult in the near future. No doubt I will notice the shift far more within my own life, as genetic information becomes easily accessible and potentially dispersed to a number of agents on my behalf. A technology that affects you, me, and the insurance companies will, naturally, affect everybody on Earth in the end. At that point, genes may not be the leaf in the tornado anymore: they may be the wind.