5:31 AM Feb 16, 1996

PATENTING INDIGENOUS PEOPLE

By Hilary Cunningham & Stephen Scharper Third World Network Features

Penang Feb (TWN) -- On 14 March 1995, the US National Institutes of Health (NIH) obtained a patent on the DNA (deoxyribonucleic acid -- the basic constituent of the gene) of an indigenous man from the Hagahai, a people who live in a remote region of Papua New Guinea. The NIH patent established claim on a cell line in the Hagahai male which is linked to adult leukaemia. The DNA, it is presumed, will assist scientists in understanding the enhancement or suppression of an immune response to a leukaemia-associated virus.

The patent is part of a much larger controversy. First, there is a critique of the patenting of DNA in general which puts the control of genetic research into the hands of powerful governments or private, largely Northern, corporations. Second, the patenting of indigenous peoples' DNA is seen by some as yet another manifestation of First World exploitation, i.e., the `mining' of indigenous communities for raw materials which now include their DNA. Indigenous peoples, critics argue, have become the target of gene `prospectors' whose quarry, in this case, is neither gold nor silver, but patentable indigenous DNA.

The Human Genome Diversity Project (HGDP) is at the vortex of this controversy. Established in 1991, the HGDP brought together anthropologists and geneticists concerned that the Human Genome Project betrayed an ethnocentric bias. It was, they claimed, too narrowly focused on Anglo-European populations. Aspiring for a more diverse and therefore more extensive catalogue of human genes, these scientists felt that a broader sampling of ethnic populations would not only better the project's goal to combat common human diseases, but also assist anthropological efforts to reconstruct the story of human evolution and explore issues of human adaptation. The HGDP today represents an informal consortium of international scientists and universities who aspire to collect information on human genome variation.

One of the principal goals of the consortium has been to obtain blood, tissue and hair samples from genetically-distinct populations, many of whom are considered `endangered', i.e., populations which may either shortly vanish from the human family or become genetically assimilated into other ethnic groups.

In October 1992, HGDP scientists identified 722 populations that constitute highly desirable candidates for genetic study. Among these populations are: the Hadza (around 200 remain in Tanzania); the Kung (roughly 15,000 members reside in the Kalihari Desert) and certain Somali communities; the Plains Apache (1,000 remain in Oklahoma), and the Sarcee and Deleware (each numbering around 600); the Akuriyo (about 50 remain in the Amazon), the Yanomami (approximately 20,000 live along the border of Venezuela and Brazil), and the Dorasque of Panama (roughly 50 remain); the Yukaghir (fewer than 100 live in Siberia) and the Chukchi (10,000 live in the Chukchi peninsula of north-eastern Siberia); and several Onge Greater Andamanese populations (these groups reside in the Andaman Islands off Malaysia and number less than 100 each).

While many of these groups were selected because of their linguistic and cultural uniqueness, some are also considered to be `genetically distinctive', i.e., scientists have speculated that they probably have genetic compositions that are slightly different from that of most other humans. Some scientists argue that these populations could be extremely helpful in the identification of certain `disease genes'. By isolating, for example, genes located in populations with an unusually high incidence of an inherited trait such as breast cancer, baldness, diabetes Type II, or obesity, some geneticists hope that they may be able to develop helpful treatments, possibly cures, and certainly diagnostic tests for these traits.

Yet, while indigenous populations may represent important scientific resources for genome researchers, many are also communities who have been colonised or enslaved, pushed off their lands and forced onto reservations, virtually wiped out by diseases introduced into their communities by Europeans, exploited as cheap labour, exposed to nuclear weapons testing on their homelands by colonial powers, and generally marginalised within the global economy. Several of these groups are, in fact, quite appropriately termed `vanquished peoples', representing the only surviving members of traditional societies, victims of so-called Western `progress'.

Fully aware of the historical marginalisation of such indigenous peoples, several non-governmental organisations (NGOs) have expressed scepticism at the HGDP's non-governmental and non-commercial enterprise status. They argue that the HGDP will be caught up in the current trend to commercialise indigenous DNA. HGDP scientists, they fear, could simply become agents of the commercial interests of pharmaceutical companies.

The World Council of Indigenous Peoples, for example, has publicly condemned the HGDP, and one NGO, the Rural Advancement Foundation International (RAFI), which has documented the exploitation of Third World plant and animal resources by Northern commercial interests, has called for the complete halt of the HGDP until the terms of indigenous participation are agreed upon by aboriginal peoples. Most recently, a Sami indigenous women's group at the Beijing Women's Conference added its voice to indigenous people's organisations that have denounced the HGDP. Indeed, many of these groups refer to the HGDP as `the vampire project'.

In the light of a growing connection between HGDP scientists and commercial pharmaceutical concerns, HGDP scientists are being challenged to clarify not only their role in relationship to the commercialisation of DNA, but also their role as Western scientists who lack credibility among indigenous groups given the West's record of exploitation. This clarification is particularly important in light of how DNA, and in particular indigenous DNA, is currently being commercialised.

Scientists from Sequana Therapeutics (a California-based `genomic' company), for example, in conjunction with scientists from the Samuel Lunenfeld Research Institute of Canada (affiliated with the University of Toronto), were able to collect samples from the people of Tristan da Cunha, a tiny island of just under 300 inhabitants located halfway between Brazil and South Africa. The inhabitants, who are all descendants of the island's original seven families, exhibit one of the world's highest incidence of asthma (30% of the population suffer from asthma and 20% are carriers). Sequana implies that it has the information necessary to identify and eventually patent the gene or genes which predispose people to asthma.

Recently, Sequana sold the licensing rights to a diagnostic test for asthma to a German firm (Boehringer Ingelheim) for $70 million. Another example involves scientists from the Rockefeller Institute in New York, who, in conjunction with their research on obesity genes in lab mice, have extracted blood samples from the inhabitants of Kosrae, an island in the Federated States of Micronesia in the South Pacific where obesity has a high incidence. These scientists hope to identify the obesity gene in humans in order to understand how the amount of fat stored in the body is regulated. Rockefeller University has been offered $20 million by Amgen, a California-based pharmaceutical company, for licensing rights to the obesity gene and has been promised additional payments of up to $90 million.

Given anthropology's historical role in, and insensitivity to, the exploitation of indigenous communities, these ethical concerns are particularly poignant for the HGDP membership, which includes many anthropologists. Anthropology, some have argued, emerged as a discipline deeply embedded in a racist process of constituting the `other', i.e., the darker- skinned `savage' of the Victorian worldview. This `primitive' was separated, on a hierarchical scale, from the civilised European and was thought to be inferior in cultural behaviour, mental capacity and physical characteristics.

The `primitive' thus became a source of `data', an object of scientific inquiry and study, that ultimately buttressed Victorian ideas about hereditary differences (and superiority). These differences between civilised and primitive humans were couched in biological categories (principally race) and `[were] called upon to explain history and justify present policy'. Such political-economic policies of the period, of course, included colonisation, forced-missionisation (conversion to christianity) and, in some cases, extermination.

As objects of scientific inquiry, primitives were often thought to be vestiges of an earlier moment in human history (and therefore closer to our ape-like ancestors). Their artifacts, behaviour and beliefs, therefore, became an important scientific resource -- they were to some extent a chance for the Victorian to see himself in a former manifestation, an opportunity to take a glimpse into human past in order to understand who the human was in the present. The dark-skinned savage of the anthropological gaze therefore became a mirror in which the white European could look `back' to understand the nature of the present.

In addition, many anthropologists assumed that these primitive societies were populations which would soon disappear from the human record. The recording of primitive data, then, became all the more important given time limitations. The primitive thus became a resource for Western edification, an object to be scrutinised, collected and preserved much in the same way that artifacts of antiquity might be subjected to examination and preservation.

Are the indigenous cultures identified by the HGDP at risk of becoming the `primitives' of a late-20th century scientific enterprise? The communities targeted by the project are viewed as `invaluable resources' for the advancement of science and yet those who stand to benefit from these advances -- if the historical status quo persists -- are principally white, wealthy, Western populations. Do we find here the aboriginal at risk, yet again, of being treated not only as an object of Western study and collection but also a target of Western economic exploitation?

Many genome scientists, and not only those of the HGDP, may well be embedded in a political-economy which continues to exploit the resources of some populations for the benefit of others. This is a serious ethical issue worthy of ponderous and sustained reflection.

(This is the first of a two-part feature. Hilary Cunningham is Assistant Professor, Department of Anthropology, University of Notre Dame, USA. Stephen Scharper is Visiting John A O'Brien Instructor, Department of Theology, University of Notre Dame)