|Havasupai tribal members said|
prayers over the boxes
containing the tribe's
frozen blood samples.
The lawsuit between 41 members of the Havasupai Indian tribe and Arizona State University has implications that go far beyond last week's settlement. Briefly, in 1990, tribe members had donated DNA samples specifically for use in diabetes research, which turned out not to be fruitful. The samples were stored, however, and later used for unrelated analyses, which led to two dozen published scientific papers. The Havasupai knew nothing about these until much later, and found some of them particularly offensive. One contradicted their origin beliefs, for example, while another deduced a high incidence of inbreeding.
Commentary has largely focused on the question of informed consent, which is certainly valid and important, and it's good that this discussion is getting a higher profile. However, there is a false assumption in comments, however well-intentioned, such as this, from Stephen J. O'Brien of the NIH Laboratory of Genomic Diversity:
"We have to communicate a hell of a lot better to the public what is going on when we put their specimens in our biobanks."
Many scientists appear to believe that if they only explain what they are doing clearly enough, then research subjects will accept the validity of their particular scientific enterprise. That's not necessarily true. Questions of familial and tribal identity may have a very different meaning to one group of people than they do to another, as Louise Erdrich recently explained. Genomic scientists have an understandable tendency to genetic reductionism and a focus on the individual; other groups with more communitarian assumptions may simply disagree on the values involved.These misunderstandings can partly be addressed with empathy and common decency -- telling the truth and treating other people the way that you want to be treated. But we are not dealing here with the Tuskegee case, in which the abused participants were viewed as "subjects, not patients; clinical material, not sick people." These scientists not only meant no harm, they doubtless intended to do good, and clearly feel misunderstood. "I was doing good science," insists Therese Markow.
Assertions of "good science," however, are not the end of discussion, but a prerequisite for the start. Full disclosure does not guarantee acceptance, and rejection is not necessarily a sign of ignorance. What researchers and subjects alike have to deal with is a clash of worldview. For instance, consider this classic 2006 New York Times headline:
DNA Gatherers Hit Snag: Tribes Don't Trust Them
The implication would be rather different had it read, DNA gatherers hit snag: They don't understand the people they are dealing with. It is by no means certain that fully informed consent could ever be obtained, and scientists may need to adjust to that reality.
As part of this settlement, the Havasupai have agreed to ask other
tribes to cooperate with researchers (some had been refusing, partly no
doubt out of solidarity). But scientists still have an important obligation to try to see the world from the point of view of their research subjects -- and not to assume that theirs is the only way of being in the world that is valuable. That lesson is likely to take a lot longer to learn.
Previously on Biopolitical Times:
Posted in Bioethics, Human Rights, Pete Shanks's Blog Posts, Policies, Race, Sequencing & Genomics
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