by Hilary Cunningham & Stephen Scharper
from an email list (Third World Network Features), 2/23/96
The authors explore from both an ethical and an anthropological perspective, the role of indigenous people in the Human Genome Project. They argue that because of their historical position as marginalised people and their exploitation by political and corporate interests, the role of indigenous people in the Project is highly problematic. In their reflections on the Human Genome Project, the authors look further into the ethical and political issues, which include \Qinformed prior consent', protection of indigenous resources and knowledge, and cultural and moral attitudes toward the patenting of life forms.
About the writers: Hilary Cunningham is Assistant Professor, Department of Anthropology, University of Notre Dame. Stephen Scharper is Visiting John A O' Brien Instructor, Department of Theology, University of Notre Dame.
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 \Qmining' of indigenous communities for raw materials which now include their DNA. Indigenous peoples, critics argue, have become the target of gene \Qprospectors' 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 \Qendangered', 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 \Qgenetically distinctive', that is, 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 \Qdisease 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 \Qvanquished peoples', representing the only surviving members of traditional societies, victims of so-called Western \Qprogress'.
Fully aware of the historical marginalisation of such indigenous peoples, several non-governmental organisations (NGOs) have expressed scepticism at the HGDP's status as a non- governmental and non-commercial enterprise. They argue that the Diversity Project 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 \Qthe 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 \Qgenomic' 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 incidences 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 \Qother', i.e., the darker- skinned \Qsavage' of the Victorian worldview. This \Qprimitive' 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 \Qprimitive' thus became a source of \Qdata', 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 \Q[were] called upon to explain history and justify present policy'. Such political-economic policies of the period, of course, included colonisation, forced-missionisation 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 \Qback' 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 \Qprimitives' of a late-20th century scientific enterprise? The communities targeted by the project are viewed as \Qinvaluable 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.
What are some additional ethical and political issues surrounding indigenous populations and genetic research? For the purpose of this paper, we have divided these issues into three categories.
The first category involves issues of \Qinformed prior consent'. Although scientists and fieldworkers extracting the samples from indigenous populations follow informed prior consent guidelines, these guidelines often do not mention how their DNA or a product derived from it may become a market able commodity that could potentially benefit private companies. Individuals participating in genetic sampling projects are often told that they are making a contribution to science but are not necessarily informed of the commercial dimensions of the project. As a result, many indigenous groups are beginning to see themselves as the \Qunwitting subjects of corporate patent claims'.
The second category involves the protection of indigenous resources and knowledge. The Trade-Related Intellectual Property Rights (TRIPs) of the current World Trade Organisation favour the protection of the intellectual contributions made by corporately- sponsored scientists. Germplasm, however, is regarded as \Qthe common heritage of mankind' and is therefore patentable. This distinction between intellectual property and common heritage supports a system which allows wealthy Northern countries to extract genetic and organic raw materials from poorer nations and transform them into highly profitable commodities for sale in the North. How should indigenous communities and poor nations be compensated for their DNA resources - especially given the fact that the latter are often staggering under the weight of enormous foreign debt?
The third category includes cultural and moral attitudes toward the patenting of life forms. While the issue was resolved, at least legally, in the US courts in 1980, several of the indigenous groups involved find the prospect of patenting life forms not only foreign but also abhorrent.
For communities (such as the Guaymi) which hold life in all its manifestations as \Qsacred' and \Qcollective' (and therefore not subject to the ideologies of individual property rights), what should be their role in controlling the possible uses and kinds of research conducted on DNA samples extracted from their members?
While the HGDP does not adopt a position either for or against the patenting of human DNA, it has embraced an approach which, the organisers hope, maintains the non-commercial nature of the project. The HGDP favours a contractual approach with each indigenous community participating in the project, specifically the HGDP wishes to establish contracts with scientists using samples from its data bases that respect the wishes of indigenous communities. In this way, the HGDP argues, the benefits of commercialisation would not only go to the sampled communities but proceed with the community's consent and control.
The following excerpt from the HGDP fact sheet prepared by the organisation's North American Regional Committee notes: \Q...the HGDP is committed to two propositions: 1) that financial benefits should not go to the Project and 2) that an adequate part of the financial gains, if any, must go back to the sampled populations. The best ways to implement those commitments are not yet entirely clear. Implementation depends on some complex issues of patent and contract law that have not been entirely resolved, as well as on some decisions by the sampled populations or their representatives on how best to proceed. The Project plans to make the implementation decisions after consultation with such representatives. But, whatever method ends up being chosen to implement the Project's commitments, the commitments themselves are firm.
The HGDP will not profit from the samples and it will do its best to make sure that financial profits, if any, return to the sampled populations.'
In the HGDP scenario, the Project would act as a kind of \Qmiddleperson' between commercial and indigenous groups, and require that scientists using its data banks sign contractual agreements based on the wishes of the communities from whom the samples have been extracted. The logistical and legal problems with this approach -- including who or what bodies would represent indigenous groups -- are acknowledged in HGDP policy. It nevertheless states the Project's aversion to anything resembling `biopiracy'.
Several indigenous coalitions, including the World Council of Indigenous Peoples (WCIP), Survival International, the Third World Network, and those groups represented at the First International Conference on the Intellectual and Cultural Property Rights of Indigenous Peoples held in New Zealand in 1993, are sceptical of such a plan. They proffer a different approach.
In addition to voicing their opposition to the patenting of any living organism, these groups have underscored the need for both indigenous control of their own resources and the recognition and respect of the international community for their \Qpast, present and potential contributions'. Those participating in the third workshop in Suva, Fiji, have called for the establishment of a Life-Form Patent-Free Zone in the Pacific.
A similar conclusion was reached by a group of North American NGOs forming the \QNo Patents on Life Coalition' who have concluded that the patenting of life is `morally unaccept able, fundamentally inequitable and technically unworkable'. One of the central points emerging from this coalition is an emphasis on the structuring effect of a political economy on the use of natural resources: the coalition has concluded that there is an inevitable nexus between the patenting of life forms and the capitalistic expropriation of biological resources, a linkage which, the coalition avers, will only result in the further exploitation of indigenous and Third World peoples.
The envisioned practice of extracting blood, tissue, and hair samples from indigenous populations risks representing a process that could be referred to as the genetic colonisation of Third World peoples. It is particularly important that scientists collaborate with indigenous communities and do their utmost to separate themselves from the commercial exploitation of marginalised populations. The age of imperialism, alas, has yet to run its course. It seems that now, in the twilight of the 20th century, we need to be sentinels against a new form of domination, one which seeks control of the very molecular structure of the human family. - Third World Network Features