THE ancestral mythology of a tribe of Apaches will be protected in an unusual
deal forged between the tribal community, bioethicists and geneticists.
Researchers are already acquiring blood samples from an Apache tribe in
Oklahoma for use in studies of genes that confer resistance and susceptibility
to disease. In exchange, the researchers have agreed not to compare the samples
to other native peoples in a way that might contradict traditional views of the
tribe鈥檚 history.
The geneticists also granted the tribe anonymity, by agreeing not to mention
its name or location in future research publications. In addition, the tribe
will have a share in any profits from the research. The details of the agreement
will appear in The American Journal of Human Genetics next month.
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Before making the agreement with the tribe, researchers interviewed up to 20
per cent of the Apache adults. Morris Foster of the University of Oklahoma in
Norman, one of the deal鈥檚 brokers, sees the project as a model for how informed
consent can be negotiated with ethnically or geographically defined communities.
鈥淭his hasn鈥檛 always been handled well in the past,鈥� he says. 鈥淎nd that鈥檚 caused
a bad reaction from indigenous and minority communities.鈥�
The identities of individuals and families are already stripped from research
publications, and Foster supports the extension of anonymity to a whole
community to protect it from the risks it can face as a result of genetic
research. Anonymity for communities should be the norm in population genetics,
he believes.
Foster doesn鈥檛 think this will impede research. 鈥淏ut it will avoid big
headlines linking some disease to some group,鈥� he says.
鈥淚 applaud this agreement,鈥� says Tom Murray, a bioethicist at Case Western
Reserve University in Cleveland, Ohio. 鈥淏ut I think it is a mistake to scale up
from it to larger groups.鈥� With about 1700 members in one location, Murray
points out that the Oklahoma Apaches are an unusually well-defined and cohesive
unit. It would be far harder to forge a consensus between Ashkenazi Jews or
African Americans, for instance. And to some people, default anonymity might
seem like an attempt to withhold important information. 鈥淚f scientists know
things and don鈥檛 tell them, that might be seen as the bigger offence,鈥� Murray
says.