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Thumbs Up for Long-Delayed Gene Ethnicity Survey
21 October 1997 8:00 pm
Mired in controversy for several years, an ambitious proposal to survey genetic variation in people from all over the world got a nod of approval today from the National Research Council (NRC). But the 17-person NRC committee of scientists, ethicists, and lawyers recommended a scaled-down version of the Human Genome Diversity Project (HGDP) to protect the privacy of study participants.
The story of the diversity project began in 1991, when Stanford University population geneticist Luca Cavalli-Sforza and his colleagues proposed the HGDP as a way to investigate questions ranging from human migration patterns to evolution; it also might reveal mutated genes associated with disease. The project would involve collecting and storing DNA samples from up to several hundred members of some 500 linguistically distinct populations world wide.
The idea for a survey was controversial from the start. Geneticists and anthropologists argued over whom to sample and what genes or DNA markers to study. Others strongly protested the project itself, saying that the data could be used to discriminate against the participants should their DNA reveal susceptibility to particular diseases--and that subjects would receive no royalties if their DNA were used for commercial purposes. The National Science Foundation (NSF) and the National Institutes of Health asked the NRC to examine these concerns before making a decision about whether to try to support a survey. "We could see that the ethical and legal issues might be the ultimate stumbling block that would doom the project," says committee chair William Schull, a geneticist at the University of Texas School of Public Health in Houston.
Rather than dooming the project, the committee's report recommends a limited study design that would keep participants anonymous. No medical histories would be taken. The committee also suggests that project backers support only work originating in the United States until after the completion of complex negotiations between U.S. researchers and the leaders of the populations to be studied about safeguarding the rights of participants.
HGDP planners say they are relieved to have the panel's endorsement, as U.S. participation in the survey has been on hold until after this report--2 years in the making--came out. "The world has already started the human genome diversity project," says Cavalli-Sforza, citing data-collection efforts in Europe and DNA databases that have been set up in India and Pakistan. "We now have an official statement that it is a good project, and we'd like to go ahead." However, predicts NSF biological anthropologist Dennis O'Rourke, much planning remains to be done before NSF would be able to fund the project.