Genes, People, and Property: Furor Erupts over Genetic Research on Indigenous Groups
Genes, People, and Property: Furor Erupts over Genetic Research on. Indigenous Groups
During the past twelve months, two scientific endeavors that concern indigenous people - the Human Genome Diversity Project and the Hagahai gene patent case in Papua New Guinea (PNG) - have gained remarkable notoriety, but remain poorly understood. The articles in this issue provide an overview of the projects and the nature of the objections to them. As background, we are also including excerpts in the debate, some frequently used terms, organizational charts, as well as a sampling of the voluminous international press coverage and internet postings that continue to appear. The Human Genome Diversity Project (HGDP)
As Chair of its North American Committee, Kenneth Weiss presents the case for the proposed HGDP that was conceived in 1991 as a comprehensive study of genetic diversity across the broad spectrum of humanity. To this end, its proposed intention is to include a large number of indigenous peoples. It most sensitive aspect would be the establishment of centralized collections of genetic material of the people en the study that could be used for a variety of bio-medical or anthropological studies for many years to come. At present, small and haphazardly assembled collections of human DNA or transformed cell lines already exist in the number of laboratories. Weiss argues that unless a more systematic study is carried out among the world's populations, including information on the people and their environments as well as their genes, the results will be of very limited use the are likely to be misleading. The viral DNA patent cases from the Western Pacific
Three articles describe the two closely related viral gene patent applications involving the National Institutes of Health (NIH) National Institutes of Neurological Diseases and Stroke and indigenous populations is the Western Pacific.
First, Amar Bhat of the NIH Fogarty International Center gives a short history of the "PNG (Hagahai) patent" case, issued in March 1995 by the U.S. Patent and Trademark Office, as well as parallel Solomon Islands (SI) patent application that was withdrawn in 1994. He also describes the mission of the NIH, its interest in the Western Pacific, the use of patents by the NIH, and why the PNG (Hagahai) application was pursued. He outlines current policies at the NIH aimed at promoting collaborative international biomedical research, technology transfer, and compensation of participating countries.
Michael Alpers, Director of Papua New Guinea's Institute for Medical Research (IMR), follows with a description of the IMR's activities and its established procedures for obtaining informed consent from communities and individuals taking part in its research projects. He provides the rationale for the PNG (Hagahai) patent application within the context of unsatisfactory national and international protections that currently exist. An upcoming workshop in PNG, Alpers describes, will examine issues of biological, intellectual, and cultural property rights to begin establishing a coherent national policy on these issues. The need for this effort became painfully obvious after the Minister of Foreign Affairs and Trade, Gabriel Dusava, recently summoned Carol Jenkins to his office for a full explanation of her research activities with the Hagahai (March 1996 - see accompanying press excerpts and the Minister's subsequent statement of exoneration of Jenkins).
Finally, Yokotam Ibeji and Korowai Gane, both members of the Hagahai community, state their understanding of the patent and their agreement with Carol Jenkins, an IMR medical anthropologist. As translated by Aaron Petty and Vanessa de Koninck, the Hagahai want to retain their interest in any possible financial benefit from the viral research involving them, and they want no central government interference. This case suggests that a non-literate community, with full information and consultation, can give a more informed consent to bio-medical research than most literate individuals in industrial societies when they sign consent forms. The PNG-IMR situation appears to reflect appropriate involvement of indigenous peoples in research collaborations. Ethical and moral objections
The Rural Advancement Foundation International (RAFI) has opposed all "life patenting" for a number of years and had been the catalyst in galvanizing opposition HGDP and the DNA patenting cases, dating to 1993. They wanted to identify an appropriate case to be brought before the World Court in The Hague. In the context of the two NIH patent applications involving the western Pacific, Jean Christie of RAFI visited Papua New guinea and the Solomon Islands in late 1995 to encourage a joint application for a hearing. (Only governments and multilateral institutions may apply.) Her article presents RAFI's argument against life patenting and the HGDP, and RAFI's objective. Angry reaction of the PNG (Hagahai) patent award in Papua New Guinea was apparent in the article by Dominic Sengi (a junior Foreign Affairs official), which is reprinted in this issue.
Solomon Islands officials has previously written a letter expressing their concern on the related NIND/Solomon Islands patent application to the U.S. Department of Commerce, and there was also considerable press coverage in Honiara.
Although it is now clear that the SI application was abandoned some time ago, questions remain concerning the nature of the informed consent obtained from the hospital patients there. Ruth Liloqula from the Solomon Islands, who subsequently protested these genetic research projects at the Biodiversity Convention in Jakarta, has contributed her perspective on these issues.
In her essay, Aroha Mead, a leading Maori activist, brings together the major arguments from indigenous voices against these projects, going beyond the issue of life patenting. The themes of power, money, and continuing exploitation of indigenous peoples are familiar ones, she explains, as is the resentment of being regarded as curiosities. Mead's and Liloqula's statements against western science as a potential violator of human bodies and traditional beliefs is the new element. At its base, this argument is similar to debates in western law and politics raging over "rights to life," "rights to die," "scientific creationism," and others. Responses
Two HGDP members respond to the objections is the third group of articles. They argue that this kind of research could include indigenous populations if appropriate partnerships are developed. Henry Greely, a law professor, compares different proposals for the protection of individuals and groups from potential exploitation in genetic research. An unfortunate reality in indigenous communities, he explains, is that they have not, and in the future probably will not, enjoy the full benefits of improvements in health care that are implicit reciprocal benefits for most individuals participating in medical research in industrialized societies.
John Moore, a cultural anthropologist who has worked extensively with Indian people in North America, provides a personal account of attempts to open discussion on the HGDP with Native American groups. With exasperation and some humor, he details some of the charges leveled at him by (former?) friends and colleagues. His account shows how surprised scientists were by the anger. While they wondered aloud how representative of the world's diverse indigenous communities their attackers were, they thought they understood the problem. "Better information and education efforts would clear the air." And, "when people were shown the positive way information from DNA could be used to help the oppressed as Mary Claire King had done, for example, in the identification of abducted Argentine children (the `Dissappeared'), the distrust and suspicion could be overcome." Yet the responses from most worldwide indigenous organizations continue to be negative. A case study
The final article by Richard Grounds, a cultural anthropologist who is a member of the Yuchi community, documents this Native American group's reaction to an invitation to participate in the HGDP. It illustrates the difficulties involved in undertaking such a project in North America and the importance of specific local issues and personal experiences in determining decisions. The changing environment
The situation is still fluid. The trumpeted early promise of molecular genetics for transforming medicine is now giving way to more sober (and less frightening) assessments of the possibilities. As for policies on DNA patenting, Francis Collins, Director of the National Center for Human Genome Research, has just announced that his center may seek to "restrict to eliminate" the patent rights of grantees and ensure almost immediate public access to identified human DNA sequences. With regard to the HGDP, The MacArthur Foundation has provided funds to develop model ethical protocols. The U.S. National Academy of Sciences has been commissioned to evaluate the HGDP, including its social, ethical, and legal aspects.
The continuing issue is how to prevent exploitation or expropriation while developing mutually beneficial collaborations. If there is a way found to that goal, then perhaps an accommodation of science by traditional value systems might ultimately follow. Article copyright Cultural Survival, Inc.