Mining Humanity: Genetic Research, Indigenous Resistance and the Human Genome Diversity Project



As originally published in Toward Freedom, Winter 1998/99

Recent opposition to biotechnology and genetic engineering has focused on these technologies’ implications for food and agriculture. This is entirely necessary, as tens of millions of acres of U.S. farm land are being planted with genetically engineered crops that have serious consequences for our health, and for the integrity of living ecosystems. With multinational chemical companies like Monsanto and Novartis buying up major commercial seed companies at a staggering pace — Monsanto alone has purchased six of the largest and most influential seed companies in the past two years — the cause for alarm is beyond question.

Medical research using the methods of genetic engineering raises a more difficult dilemma for critics. With researchers promising to find a genetic basis for diseases like cancer and AIDS, not to mention scores of rare but debilitating genetic disorders, many are hesitant to criticize. Even Jeremy Rifkin of the Foundation for Economic Trends, perhaps the world’s best known critic of biotechnology, has recently equivocated on this question. While describing in detail many of the serious ethical and social consequences of biotechnology, Rifkin’s latest book, The Biotech Century, describes promised future medical advances with an enthusiasm, and an air of historic inevitability, that only the industry’s most loyal boosters could match.

There is, however, one group of people who have not hesitated to criticize today’s genetics-centered medical research agenda. They are the representatives of the many indigenous nations throughout the world that are increasingly the subjects of genetic research. In a search for genetically distinct groups of people, from which genes linked to particular disease-related traits can be isolated and identified, scientists have traveled to the ends of the earth. Since the most isolated populations are usually the most genetically homogeneous — and since conditions of poverty and undernourishment increase the likelihood that a genetic propensity to disease will be expressed within a person’s lifetime — researchers often focus their efforts on remote indigenous populations.

Scientists have trekked to Saudi Arabia in search for genes for glaucoma, to Ghana and Nigeria to study diabetes, to Mongolia for studies on congenital deafness, and to the remote South Atlantic for research on asthma. Researchers from the University of Iowa regularly travel to a remote Philippine island to collect blood and tissue samples from a population with an unusually high incidence of cleft lip and palate. A group from the University of Toronto has been searching blood samples from a remote island in the South Atlantic for a gene for asthma. These expeditions were funded by a California based company called Axys Pharmaceuticals, which in turn sold its rights to the German pharmaceutical giant Boehringer Ingelheim for $70 million. The pharmaceutical industry clearly expects profitable results from this kind of research.

Indigenous activists see it very differently, however. “Fraud, deception and bribery are being used to take samples from indigenous populations around the world,” Debra Harry, founder of the Indigenous People’s Coalition on Biopiracy, recently explained at a scientific symposium sponsored by the American Association for the Advancement of Science. The cases of bribery are well documented. Populations that agree to donate blood and tissue samples are often promised significant improvements in medical care. Researchers promise better community health services, provide hard-to-get medicines, and introduce people to the latest Western technologies, from cameras and tape recorders, to thermos bottles and even solar refrigerators. However, communities are rarely informed about the full range of uses for their genetic information. They have never been party to the multimillion dollar agreements between research institutions and pharmaceutical companies that have become routine in the world of biotechnology.

There are serious cultural conflicts as well. Many traditional peoples maintain long-standing strictures against meddling with another person’s body, their blood, hair, saliva, clothes, or even their excrement. Burial ceremonies are designed to assure that the entire body of the deceased, and often their most treasured belongings, are buried with them. Many cultures carefully protect placentas against tampering until they are buried according to traditional practices, and some Pacific island cultures even share a tradition of not violating another’s footprints. The taking of blood and tissue samples for research is seen by many as a threat to the integrity of the traditional lifeways that have sustained them for millennia.

In the context of centuries of colonial and neocolonial domination, it is easy to understand why many indigenous activists see this kind of research as yet another step on the road to extermination. “[T]he more information the outside world has of our natural resources, the more they rob and destroy them,” wrote Ruth Liloqula of the Solomon Islands in a 1996 special issue of Cultural Survival Quarterly devoted to this question. “The only thing we have left and can call our very own is our genetic make-up. When this becomes the property of another body through a government that takes no part in our daily life and has no involvement at all in the composition of our genetic makeup, we are no longer safe from being exterminated or from being exploited to the point of non-existence.” Just a few years ago, the people of the Solomon Islands, along with the indigenous Guaymi people of Panama and the Hagahai of Papua New Guinea, were the subject of patent claims on their genetic material that were granted to the U.S. government’s National Institutes of Health (NIH). Each of these patents, justified by the laboratory identification of unique genetic traits, were subsequently renounced by the NIH in the face of widespread international outrage.

“Over the last 200 years, non-Aboriginal people have taken our land, language, culture, health — even our children. Now they want to take the genetic material that makes us Aboriginal people as well,” writes John Liddle, director of the Central Australian Aboriginal Congress. Since the early 1990s, sixteen separate gatherings of indigenous activists around the world have passed resolutions questioning the social, economic, political and ethical implications of genetic research on indigenous peoples. The International Indian Treaty Council, based in San Francisco, has called for a moratorium on this research until indigenous people’s concerns are fully addressed and the United Nations adopts international standards. This indigenous opposition was crystallized in 1994 by the establishment of a Human Genome Diversity Project by agencies of the U.S. government.

The Human Genome Diversity Project was created at the urging of prominent scientists to correct the distinctly Eurocentric bias of the multibillion dollar Human Genome Project (HGP). The HGP is a worldwide effort, supported by most of the world’s leading industrial nations, which seeks to discover a complete, sequential map of the human species’ 100,000 odd genes by the year 2005. The HGP, which is managed in the U.S. by the Department of Energy, has jump-started the emerging field of human “genomics,” and led to an increasing focus on identifying human genes that are of potential commercial interest. With the cooperation of HGP agencies around the world, biotechnology companies have expedited the discovery, patenting and commercialization of human genetic traits, and are using this knowledge to consolidate their growing influence over the rapidly concentrating pharmaceutical industry. This past May, a former NIH researcher, Dr. Craig Venter, teamed up with a leading scientific instrument company, Perkin-Elmer, to establish a private, for-profit company to accelerate the process of identifying — and patenting — important human genes.

While most genetic mapping protocols developed under the HGP are designed to sequence a “typical,” i.e., Euro-American set of chromosomes, the Genome Diversity Project claims to offer a more balanced view. Proponents promise a scientific blow against racism by demonstrating, for example, that genetic variations among individuals are far greater than between so-called “racial” groups. Geneticist Kenneth Kidd suggests that such knowledge can reveal useful information about the causes and consequences of human genetic variation, the evolution of disease resistance, and biological adaptations to climate and other natural conditions. Kidd’s own research has demonstrated a vastly greater genetic variation among various tribal peoples in Africa than exists in any other part of the world. He views this as supporting the hypothesis that human migration out of Africa was a single unique event in evolutionary terms, one which occurred only within the last 100,000 years.

The concerns of indigenous activists are little assuaged by such findings, however. Not only does such research challenge traditional origin myths, but researchers have demonstrated little concern for the real-world survival of the groups they have studied. Indigenous peoples are described as “isolates of historic interest,” and scientists focus on the need to collect and immortalize tissue samples before various populations disppear from the face of the earth.

Indigenous activists see little meaningful distinction between the scientific undertakings of the Human Genome Diversity Project, the commercial patenting and ownership of human genetic material, and the aggressive efforts of transnational pharmaceutical companies to expropriate indigenous knowledge as “intellectual property” under the rules of the World Trade Organization. Each of these activities reflect an endemic disregard for indigenous people’s biological and cultural integrity, and a continuation of the Western legacy of colonialism and conquest. Medical research, the identification and patenting of genes, and bioprospecting for commercially useful plants and other products from native lands are often undertaken by the same people, and sponsored by the same thoroughly unaccountable institutions.

To allay the vocal concerns of research subjects, the Human Genome Diversity Project and the NIH have collaborated on efforts to develop a “Model Ethical Protocol” for genetic research. This document, presented to the scientific community at a meeting in Philadelphia earlier this year, urges researchers to respect cultural diversity and address human rights issues, advocating sensitivity to group identity, divergent world views, and awareness of the ravages of colonialism. But precise definitions are often difficult, and the problem of group rights is rife with ambiguities.

Are researchers to recognize the sovereignty of particular villages? Of official tribal governments? The conflicts between traditionalists and assimilationists in many indigenous communities are persistent, and often intractable. What does it really mean for people to share in the benefits of research? Should research subjects be able to restrict commercial uses, or alter research priorities to better match their community’s needs? When does providing medical services to sampled populations cross the ethical line and become a form of bribery? Questions such as these are inherently open-ended and sometimes unanswerable in principle. While commercial research on human DNA is proceeding at an accelerating pace, the Human Genome Diversity Project is serving as a forum for ethical debates and detached scholarly debates, while providing a symbolic lightening rod for critics of genetic research. The Project’s primary goal of providing a worldwide repository of blood samples and human cell lines in the public domain has yet to receive any substantial funding.

Even if these profound ethical issues are someday resolved, the Model Ethical Protocol does not even begin to address the profound genetic bias that has diverted the course of medical research in recent years. Spurred by advances in biotechnology, modern medicine has radically shifted its focus from external causes, such as viruses, bacteria, and environmental toxins, toward identifying internal, inherited susceptibilities to disease. We are conditioned by the media, and increasingly by medical practice, to accept that the identification of a particular gene, even if it is shared by only a small portion of those who contract a particular disease, means that the gene “for” that disease has been discovered. For example, the widely publicized “breast cancer genes” account for less than ten percent of all cases of breast cancer; nearly 95 percent of breast cancers are not familial, and those who carry one of the dreaded genes still have about a 50 percent chance of contracting the disease.

Yet both research priorities and media attention have shifted dramatically from the well-known environmental causes of cancer, toward an ever narrower focus on so-called “cancer genes.” This blaming-the-victims approach has largely superseded research on the underlying environmental causes of many chronic diseases. Research on environmental illness is being reduced to identifying and screening for genetic “markers” that identify those who may be most susceptible; a new government-sponsored Environmental Genome Project allocates $60 million for this purpose.

Even where the genetic basis of a disease is well understood by scientists, it rarely brings us any closer to a “cure,” but the easier identification of disease susceptibilities, in adults or prenatally, has opened the door to new kinds of discrimination. For example, one in ten African American babies in the United States is born with at least one copy of the sickle cell gene, while only one in 500 actually has sickle cell anemia. Although the exact molecular basis of sickle cell anemia has been known for thirty years, scientists still do not understand why some people afflicted with the condition become seriously ill as young children, while others are affected much later and to a far less serious degree. Yet discrimination by insurers and in the workplace against those who test positive for the sickle cell gene has been widespread since genetic tests for this condition first became available in the late 1970s.

“What if the earlier generation of public health workers had spent their research money on figuring out which arm of which chromosome holds the ‘gene for’ susceptibility to cholera?” sociologist Barbara Katz Rothman asks in her new book, Genetic Maps and Human Imaginations. Would this knowledge have superseded efforts to provide everyone with safe drinking water? This is a very apt metaphor for the outlook of today’s medical biotechnology. While the methods of genetic screening, DNA-based drug identification, and even gene therapy might offer tangible benefits for some people, the narrow genetic bias of such research ultimately diverts attention from the underlying, preventable causes of common human afflictions. To address these causes requires not only a different research agenda, but a real commitment to address the underlying social and economic roots of poverty, social decay and environmental destruction.

A longer, fully footnoted version of this article was published this past summer as an Occasional Paper of the Edmonds Institute (20319 92nd Ave. W., Edmonds, WA 98020). Brian Tokar is the author of Earth for Sale and The Green Alternative, and is currently editing a comprehensive anthology on the implications of biotechnology.