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UNITED STATES: Gene Project Deemed Unethical

Danielle Knight

WASHINGTON, Nov 1 1997 (IPS) - International indigenous and environmental organisations are applauding a respected scientific group’s recent conclusion that efforts to collect ‘endangered’ human blood and hair tissue are unethical and scientifically flawed.

The U.S. government’s National Research Council (NRC) last week denounced proposals for a Human Genome Diversity Project (HGDP), a bid to collect DNA samples from more than 700 communities – mostly of indigenous people – from around the world.

Ethicists and indigenous people’s advocates view the development as vindication of their five years of protest against the nascent HGDP and similar efforts already under way.

“We welcome the NRC report,” says Abadio Green, who as president of the National Indigenous Peoples’ Organisation of Colombia testified before the NRC committee of scientists, lawyers and ethicists. “HGDP never seriously consulted and worked with the subjects of the proposed project and never fully addressed concerns raised by indigenous people.”

“The Project’s survival is definitely in question,” says Pat Mooney, director of the North American-based Rural Advancement Foundation International (RAFI), an international conservation and biodiversity organisation.

The HGDP, developed by an international group of geneticists and molecular biologists and supported by the U.S. National Institutes of Health and other federal agencies, aims to take genetic samples from human communities deemed to be on the verge of extinction, store these, and use them for research.

Among the groups targeted for DNA sampling are the Yukaghir of Siberia, whose numbers have dwindled to around 100; the Amazon’s Akuriyo, of whom about 50 remain; Somalis hit by famine; the Delaware and Sarcee of North America, whose combined population stands at 600; and the Salsiat of Taiwan.

The project is estimated to cost 23-35 million dollars and likely will have serious implications for indigenous people, says RAFI. Products and processes extracted from the collected material could have enormous commercial value and the genetic material itself may be patentable.

A physician in Seattle, Washington, for example, patented the cells of his patient, John Moore, without Moore’s informed consent. Novartis, a Swiss company, now sells pharmaceutical products derived from those cells.

Moore, in testimony before the NRC last year, asked, “Do you think a system that could not protect me will protect the rights of peoples or individuals in other countries?”

Moore’s case makes clear that “it is impossible for HGDP to ignore the fact that the floodgates have been opened to private monopoly control over human genetic material,” says Hope Shand, research director at RAFI.

“Will profits be made from the genes of poor people whose survival is in question? Who will have access to stored genetic material, and where will these collections be located? What, if any, will accrue to the indigenous people from whom DNA samples will be taken?” Shand asked the committee.

Green has spoken in detail about the large-scale collection of blood and tissue samples from indigenous people in Colombia. He alleges that researchers have taken advantage of the good faith of the indigenous people, keeping them in the dark about the research being done on their cells.

What’s more, he adds, “it seems to us unethical to invest millions in keeping our cells frozen in gene banks….The preference is to immortalize cell lines before we disappear, rather than investing that money in preventing the erosion of human diversity by improving the economic, social and cultural conditions of our communities.”

Echoing the sentiments of indigenous people’s organisations and other groups, the NRC concluded that “much or most of the international controversy over collecting genes to study human genetic variation would disappear if the patenting of genes and gene sequences were outlawed.”

Nevertheless, the NRC adds, a global survey of human genetic diversity is worthwhile. The problem with the HGDP proposal is that it “does not clearly explain the purpose of the project or provide the necessary safeguards for protecting participants,” the body says in its report.

“A collection of DNA samples that represents the whole of human genetic diversity could provide insight into human evolution and origins, and serve as a springboard for important medical research,” says William Schull, chairman of the NRC committee and director of the Human Genetics Center at the University of Texas School of Public Health. “But this research must not be used as a means for discriminating against individuals or groups in any way,” Schull adds. “Scientists must be aware of potential abuses and inform participants of possible risks before any samples are taken.”

Indigenous people say the design and implementation of a survey of human genetic diversity must include their full participation. “That means indigenous peoples’ control over samples after collection and full protection from patents claims on our tissues,” says Leonor Zalabata Torres, an Arhuaco indigenous person from Colombia.

The NRC recommends that if a diversity study goes forward, it should be closely supervised and that the U.S. government should initiate discussions with the United Nations or other international agencies that might be well-placed to govern such a global survey.

The NIH and other supporters of the HGDP say they are studying the implications of the committee’s findings. RAFI, however, says these groups have resisted calls for U.N. supervision of the project.

By denouncing the HGDP but endorsing the possibility of an alternative survey of genetic diversity, the NRC risks promoting piecemeal efforts rather than the type of well-coordinated, ethical, and subject-sensitive study it envisions in its report, Shand warns.

“First we need to see if a project that meets the approval of research subjects can be designed,” adds Alejandro Argumedo of the Peru-based Indigenous People’s Biodiversity Network. “Then – and only then – can a discussion of funding collections start.”

Until it is proven that such a project can be developed, indigenous peoples’ organisations are calling for an international moratorium on the collection of human DNA samples.

 
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