Mapping the Territory
(Page 2 of 2)
March/April 1996
By Hank Greely, Utne Reader
The Human Genome Diversity Project is an effort to expand our knowledge of all 5.5 billion human genomes, moving beyond the small minority of the world's population that has recent roots in Europe. The project hopes to collect, preserve, and analyze DNA samples from about 500 populations around the world--big and small, indigenous and nonindigenous--that have not been extensively studied. The resulting data should be an invaluable resource for studying how closely different peoples are related and, therefore, the history of our species.
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The project currently consists entirely of several committees--regional and international--of geneticists, anthropologists, and other interested people. These committees are planning work in their regions and trying to raise, from governments and other noncommercial sources, the roughly $25 million to $35 million it would take to do this work in five to seven years. Apart from pilot projects in Europe and China that may eventually become affiliated with the project, no DNA collection is going on anywhere in the world under the project's auspices.
The Diversity Project is about our shared human history, not about commercially valuable genes, but it has to confront the possibility that samples it collects might generate commercial products. The project has vowed that it not reap any commercial gain from the samples it collects and will seek to ensure that, should anyone make money as a result of the samples, a fair share of the benefits return to the participating populations. Its North American Regional Committee has gone farther in suggesting direct protections for participating populations.
Specifically, the North American committee has proposed requiring participating researchers to obtain the informed consent of the population, as well as individual participants, before sampling. As part of this group informed-consent process, the population would set the terms for use of its samples. The terms might include no patenting, patenting only with the negotiated consent of the population, or patenting only with the consent of a third party "trustee" for the population. Researchers have access to the samples or data only if they agree, by contract, to respect the conditions.
The system under discussion by the Diversity Project's North American committee would thus put control over commercial use in the hands of those populations that decided to take part in the project--where we, and, we think, they, believe it should rest. "Biocolonization" is a legitimate concern, but the Diversity Project is part of the answer, not part of the problem.
Hank Greely, a professor of law at Stanford University, specializes in health law and policy. He serves on the North American committee of the Human Genome Diversity Project, and chairs the committee's ethics subcommittee. He also chairs the steering committee of the Stanford University Center for Biomedical Ethics.
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