Should genes be taken from communities and patented?
>GENE HUNTING
> CRITICIZED BY U.S. RESEARCH COUNCIL
>> 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.”
>> —Craig Benjamin
>>>>This article submitted by Native Americas on 2/23/98
