Copyright © 1999 NLThomas
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Although the scientific community is becoming more aware of indigenous peoples' concerns over the collection and potential patenting of human genes, recent developments in the United States suggest that the pressures on indigenous communities to participate in such studies are actually likely to increase, at least in the immediate future.

The best known research project involving the collection of gene samples of indigenous peoples internationally is the Human Genome Diversity Project. The HGDP is also one of the largest projects, proposing the collection of blood and tissue samples from more than 700 peoples worldwide. Although pilot projects for the HGDP are already underway, funding has been delayed, largely because of protests by indigenous peoples' organizations and others.

In October the U.S. National Research Council, which had been called upon to review the HGDP, released a report highly critical of the project. After studying the issues for more than two years, the NRC concluded that the HGDP does not provide "the necessary safeguards for protecting participants."

Some of the safeguards the NRC says need to be put in place include independent oversight, not only of the HGDP but of all genetic diversity studies; clear protocols preventing reuse of blood and tissue samples for commercial and other purposes; and provisions for participants to withdraw from projects and to reclaim any blood and tissue samples that already have been taken from them.

The report also recognizes that the patentability of human genetic material is cause for concern. Currently, human genes can be patented in much of the industrialized world, even without the consent of the sampled individuals or peoples. In fact, the U.S. government has actually patented the genes of the indigenous Hagahai of Papua, New Guinea, altho-ugh it later disclaimed the patent after public protest.

Despite the concerns which it raises, the NRC nonetheless recommended that the U.S. government "should provide funding for a global survey on human genetic diversity." Committee chair William J. Schull said in a press release, "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."

Debra Harry, a Northern Paiute researcher who has been vocal in opposing the HGDP, calls the NRC's endorsement of genetic diversity studies, "blatantly irresponsible." Harry says many of the recommendations for safeguards are worthwhile, although they do not go far enough in terms of concrete protection for indigenous communities targeted for collections. However, Harry says the real problem with the report, and with other similar reviews undertaken by the scientific community, is that it begins with the assumption that genetic sampling is a good thing and, therefore, concerns itself only with setting the terms for this research to continue.

Harry was one of the organizers of an international indigenous peoples' workshop on the HGDP help in Kuna Yala, Panama, in November. Representatives from 25 indigenous peoples' organizations from throughout the Americas participated in the workshop. Many of these participants came from countries such as Colombia, where there has already been extensive collection of indigenous peoples' genes. Their final declaration called for a moratorium on collections of indigenous peoples' genes and on government funding for related research projects.

U.S. government funding for studies of genetic differences among groups of people is steadily increasing. While the NRC's investigation was underway, financial support for studies of human genetic diversity by the U.S. National Science Foundation nearly doubled, exceeding $2 million in 1997. Among those projects funded by the NSF in 1997 are projects of the HGDP.

Some of the current projects include studies on the susceptibility to diabetes and resistance to cancer among Plains Apache in Oklahoma; a comparison of the exhumed bodies of ancient Native Americans in Nevada with indigenous peoples in the Western United States today; a study of rural Quechua in Bolivia; as well as gene collections in Tibet, Western Samoa, Mongolia, Botswana, and New Guinea.

The concerns raised by indigenous peoples are being discussed not only by U.S. government agencies, but also by international agencies such as the Unted Nations Educated, Scientific,and Cultural Organization. A UNESCO Committee of Government Representatives has begun meeting with indigenous peoples' organizations to discuss a preliminary draft of a proposed Universal Declaration on Human Rights and the Human Genome. Indigenous peoples' responses to this initiative, however, have generally been unfavourable.

The UNESCO declaration is an attempt to link genetic research to human rights in general. It also makes reference to the specific rights of indigenous peoples. The preliminary draft states, "No research or its applications concerning the human genome, in particular in the fields of biology, genetics and medicine, should prevail over the respect for human rights, fundamental freedoms and human dignity of individuals or, where applicable, of groups of people."

Despite this strong wording, the preliminary draft endorses collections going ahead even without the prior, free and informed consent of the people being sampled, provided that the study is carried out for their "direct health benefit," the research meets "relevant national and international research standards or guidelines," and is "guided by the person's best interest."