I selected this article precisely because it was crafted with an eye to the early criticisms of the project. Many of these criticisms remain and have grown since the origins of the project. Where are we now? Why are some of these ethical and cultural challenges so intractable? What are viable and ethical solutions for scientists? Do these change when money is involved?
The Human Genome Diversity project
from GenEthics News issue 10
The Human Genome Diversity Project (HGDP) aims to collect biological samples from different population groups throughout the world, with the aim of building up a representative database of human genetic diversity. This seems a laudable aim, but the Project has been enmeshed in massive controversy since it was first proposed in 1991, with violent reactions from many of the indigenous people’s groups it proposes to study. Here, David King takes an in-depth look at the issues, and draws some far-reaching conclusions about the role of science and scientists in the modern world.
What is the HGDP?
The HGDP was first conceived by the eminent geneticist Luigi Luca Cavalli-Sforza of Stanford Univiversity. For many years, he and other geneticists and anthropologists have been visiting different ethnic groups around the world, collecting samples, and trying to build up a picture of how different human populations are related to each other. The samples are seen as immensely valuable, but they are in laboratories spread around the world. In 1991, Cavalli-Sforza and a number of colleagues wrote a letter to the scientific journal, Genomics, pointing out the need for a systematic study of the whole range of human genetic diversity, within the context of the Human Genome Project. They pointed to a problem: ‘The populations that can tell us most about our evolutionary past are those that have been isolated for some time, are likely to be linguistically and culturally distinct and are often surrounded by geographic barriers……Such isolated populations are being rapidly merged with their neighbours, however, destroying irrevocably the information needed to reconstruct our evolutionary history……It would be tragically ironic if, during the same decade that biological tools for understanding our species were created, major opportunities for applying them were squandered.’
Cavalli-Sforza has argued that the Human Genome Project has been Eurocentric, in that the samples it has taken, from which scientists will assemble the sequence of ‘the’ human genome, come from people of European origin. One observer has remarked that when the chromosomes are finally mapped and sequenced ‘they’ll tell us everything there is to know about one French farmer and a lady from Philadelphia.’\par Since 1991, the plan for the project has evolved, although it has still not started collecting samples. In 1993 it was formally brought under the auspices of HUGO, the Human Genome Organisation, a consortium of scientists involved in the Human Genome Project. The project is looking for $25 million over five years to collect and store blood and tissue samples from population groups around the world and create a central repository and database for study by scientists. Access to the database will essentially be free. There seem to be two main scientific objectives to the project: a) to trace the evolution and migration of different human populations, with the hope of creating a definitive ‘family tree’ of human populations; b)to identify genes which confer resistance and vulnerability to disease, and use these to develop medical treatments and tests.
Who will be sampled?
From the start, this is a question which has caused the project considerable problems. Initial documents from HGDP planning workshops contained lists of over 700 groups to be targeted, out of the estimated 5000 population groups in the world. The letter to Genomics and other early HGDP documents emphasised the need to collect samples from groups about to disappear, without expressing concern about the causes of their disappearance. Worse still was the HGDP terminology for such groups, ‘isolates of historical interest’, abbreviated to IHI’s. This immediately incensed many indigenous peoples:\par ‘After being subjected to ethnocide and genocide for 500 years, which is why we are endangered, the alternative is for our DNA to be stored and collected….why don’t they address the causes of our being endangered, instead of spending $20 million for five years to collect and store us in cold laboratories? If this money will be used instead to provide us basic social services and promote our rights as Indigenous Peoples, then our biodiversity will be protected.’ (Victoria Tauli-Corpuz, Cordillera People’s Alliance, Philippines)
Due partly to these criticisms, and partly to scientific debates within the project over the best sampling strategy, HGDP’s approach seems to have changed. The project now says that it will take samples from both minority and majority ethnic groups in industrial countries. It also emphasises that all groups will have to agree to participate in the project, and the selection of indigenous groups will depend largely upon which groups have anthropologists working with them, or members of the group who can mediate between the group and the outside world. Nonetheless, it is still expected that the first groups to be sampled will be those who are in danger of disappearing, and the overall emphasis on isolated groups as being most scientifically interesting remains.
Apart from the reactions of indigenous people, the project has also been heavily criticised by other geneticists and anthropologists. Many anthropologists, like psychologists, are alarmed at what they see as the growing dominance of their field by genetics, and the growth of genetic determinism. Critics like Jonathan Marks of Yale points out that different genetic studies produce different ‘family trees’ for populations.
There are other fundamental problems with the HGDP’s anthropology. The HGDP tends to assume that indigenous groups are genetically pure and unaffected by the massive population movements that have taken place over the last 500 years, and will thus help to provide a picture of what humanity looked like genetically before the migrations. Yet, as Marks says, the assumption that such groups are, and have been, isolated may be gratuitous and unsustainable. In fact, he says there is extensive evidence from ethnohistory of intermarriage between, for example, Native American groups, evidence which geneticists ignore. On the whole, there are very few ‘pure’ population groups which have not intermarried as the result of migration and/or military conquest. The result of intermarriage is to drastically blur the hoped-for clear picture.
Perhaps even more important is the fact, already well known from population genetics that between individuals within any one group you will find 85% of the total human genetic variation. In other words, the genetic variation between populations is much less than that within them. If the HGDP were really interested in creating a representative genetic sample of humanity, says Marks, they should collect a large number of samples from a far smaller number of ethnic groups. Clearly, the HGDP regards the inter-group variation as more interesting, perhaps more exotic, than the intra-group variation.
The project is also beset with difficult issues of practical ethics. In order to take blood, or other biological samples for research, the conventional doctrine in medical ethics is that the person giving the sample must give informed consent. Normally this means giving the person information about risks and benefits, and alternative procedures, as well as information about how the sample will be used and the purposes of the research. The researcher must not merely present information, but ensure that it is properly understood. It is not difficult to see that, when taking samples from people from indigenous groups, it will be impossible to satisfy these requirements to the standards expected in industrialised countries. There will not merely be problems of translation, but also of entirely different world views. Given that bodily integrity is sacred in many cultures, how will an indigenous person react to the idea that cells from his/her blood will be ‘immortalised’, and possibly transported around the world? How will (s)he feel about the fact that these cells may be alive after (s)he is dead?
A further ethical problem is the social structure of many indigenous groups, which do not have a Western liberal concept of personal autonomy, upon which the principle of informed consent is based. It is often suggested by HGDP supporters that in such cases the consent of elders or chiefs will cover the group, but is this really good enough? Of course, it is not for scientists to interfere with such social structures, but in such cases, how can the scientist be sure that they have any consent at all, and that they are not taking samples under duress? It seems right that people should be informed that their samples might be used to create commercial products, for private profit, since they may object to this, but there is nothing in conventional informed consent procedures to provide for this.
The project claims that it will ensure informed consent, but in reality this seems impossible. No doubt it has in mind a highly modified version of the informed consent doctrine. In any event, it seems unlikely that concerns about informed consent will stop the project. A lot will depend on the time scientists are prepared to take with indigenous groups (which will depend on funding), and their view of the people as subjects or participants in the research (see below). There are reports already of scientists collecting samples, by giving misleading or very vague information, sometimes with the pretense that samples are needed to help treat the sample donor, and then never returning.
Impacts of the project on indigenous peoples
The proponents of the HGDP are convinced that the project will bring direct benefits to the groups studied. The minimum aim must be to provide the groups studied with some basic primary healthcare support. Critics point out, however, that health problems in indigenous groups often have their roots in disruption of their traditional way of life and ecosystems, caused by the impact of the majority culture. Such problems will not be solved by applying a plaster. The HGDP has responded to this argument in their latest ethical guidelines by asserting that, ‘Any help given to participating populations should not be superficial and only of short-term usefulness.’ What this will mean in practice remains to be seen; it would certainly require a major expansion of the project’s budget to make this promise good.\par What will be the impact of information about groups’ origins? Although the information may be of interest to scientists, if it conflicts with the groups’ own stories about their origin, it may not only be extremely disruptive, but may have damaging political repercussions. Many governments would sieze eagerly on information which showed that indigenous groups were relatively recent arrivals, as a pretext to deny them their land rights.
Without doubt the most politically explosive aspect of the project is the question of the ownership of knowledge and patents. Here is a sample of indigenous people’s views: ‘The Human Genome Diversity (‘Vampire’) Project is legalised theft’ (Central Australian Aboriginal Congress).’We demand an immediate moratorium on collections and/or patenting of genetic materials from Indigenous persons and communities by any scientific project…or individual researcher.’ (Declaration of the Indigenous Peoples of the Western Hemisphere Regarding the HGDP, February 1995) ‘Commercialisation of any traditional plants and medicines of Indigenous Peoples must be managed by the indigenous peoples who have inherited such knowledge.’ (Mataatua Declaration on Cultural and Intellectual Property Rights of Indigenous Peoples, June 1993)
As the patenting of a cell line from a member of the Hagahai tribe from Papua New Guinea (GEN9,p1) demonstrates, indigenous peoples’ concerns that parts of their bodies will be collected and patented are not merely theoretical. It is important to realise that these concerns about the HGDP do not spring out of thin air. For at least the last twenty years, Third World governments and indigenous people have been protesting at the wholesale collection of samples of crops and wild plants by foreign scientists and drug and chemical companies. This collection has accelerated with the advent of biotechnology. The international non-governmental organisation Rural Advancement Foundation International (RAFI), which has done most to bring the project to the attention of indigenous peoples are campaigning against what they call an epidemic of ‘biopiracy’, or ‘bio-colonialism’. RAFI has recently documented over sixty examples of such collection projects. Only in very rare instances do the Third World people who provide the information or biological material receive any real benefit or share of the profits.
There are already many examples of corporate prospecting for human disease genes. RAFI has highlighted the case of the tiny Island of Tristan da Cunha in the South Atlantic. In 1991 two researchers from the Mount Sinai Hospital in Toronto visited the island, interested in the high incidence of hereditary asthma in the population. On the last day of their 3rd week visit they took blood samples from 272 of the island’s 295 inhabitants. It was only a year after they returned to Canada that it was announced that the hospital had a collaboration agreement with Sequana Therapeutics, a biotechnology company which is now analysing the samples to identify the asthma gene. If the gene is found, Sequana will patent it and share the economic benefits with the hospital.
The HGDP has found indigenous peoples’ ire, and the ethical issues raised by the undeniable commercial attractiveness of its proposed bank of samples, difficult to cope with. The project itself is not a commercial enterprise, and it has agreed that it will not itself gain financially from any products developed as a results of the collection efforts. Its recent guidelines state that, should patents be granted on samples from its bank, the project ‘must work to ensure that the sampled populations benefit from the financial returns from sales’ (emphasis added). Other HGDP documents reiterate this point but admit that ‘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’. These somewhat vague declarations do not inspire confidence, and indeed highlight a problem which even the most ardent supporters of indigenous people’s rights recognise: that no-one has yet devised a suitable system for financial recompense of farmers and indigenous peoples for their contributions. Should the rewards go to individuals, the group as a whole, or governments? Who really owns knowledge? Who owns genes?
The HGDP and the politics of science.
So, is the HGDP a bona fide and important scientific project, or a rampant act of bio-colonialism, designed to loot the genes of Third World people to provide expensive cures for the privileged? As ever, it seems that the answer is neither one nor the other, but what matters is the insights its behaviour provides into the scientific mindset, and the role of science in a deeply unequal world.
There can be little doubt that the proponents of the HGDP mean well. They are not racists, as they have been accused of being, but liberals. And it is their liberal naivete that is the main source of the problem. Who else but a liberal could argue, as the project persists in doing, that the project will help to reduce racism by showing that the concept of race is scientifically unsustainable? Racists do not care about science.
Combined with liberal naivete is the scientist’s arrogant intellectual superiority, which leads the project into patronising assertions, such as: ‘Many people have a limited understanding of human genetic research and consequently are fearful of it. The concerns are very real to the people involved and must be addressed.’ But as the examples mentioned above have illustrated, it is the indigenous peoples, who have suffered mistreatment for hundreds of years, who know the ways of the world far better than the scientists.\par It is also an astonishing kind of naivete that could lead to the use of terms such ‘isolates of historical interest’, and the emphasis on the technical importance of preserving samples from groups about to disappear. In response to indigenous peoples’ outrage, project members have argued, understandably, that it it is not their fault that these groups are disappearing, and that $5 million a year would make a very small dent in the problem. Individual members of the project have in fact been involved in efforts to publicise the fate of the Yanomami people of the Amazon, for example. In essence, their response is: ‘Why are you angry at us, we’re nice guys?’ What this fails to realise is the depth of oppression indigenous peoples have suffered and the depth of their anger, which is now being expressed through a politicised leadership. Indigenous groups are not interested in making fine distinctions between people they view as their oppressors.
To anyone who has observed the failures of the western model of Third World development through the application of science, the history of the HGDP to date is eerily familiar. Time and again western science has been exported to the Third World, without prior consultation with those who were supposed to benefit. Well-meaning, liberal scientists have tried to do good science and to help. And time and again the tractors have rusted in the fields, the dams have made millions homeless and the miracle crops have eroded soil, genetic resources and social structure. It seems that the lessons have not been learnt. Now, in the 1990s a group of scientists, once again without ever consulting the indigenous groups they intended to study, and without thinking through the ethical and political implications of what they were doing, have launched upon the world another scientific project. Only this time, the project touches upon two of the rawest nerves in our culture, genes and race.
In large part, the hostile reactions of indigenous groups has been due to the lack of consultation, or any real feeling of being participants, rather than merely objects of scientific study. The project has attempted to compensate for this after the fact by saying that indigenous peoples will be partners in the project, and will be invited to annual forums to discuss it, but it is difficult to believe that this really means anything. For indigenous peoples to really be participants would require another kind of project altogether. An indication of the project’s real attitude is that it makes the rather ridiculous mistake of tokenism, pointing to the Native American origins of two of the North American project committee members, as if this made a difference.
Why were indigenous peoples not consulted? The root of the problem is the arrogance of the scientist who believes that scientific method produces the only ‘true’ knowledge. In essence, it is a mistake that anthropologists learned not to make long ago. The combination of arrogance and well meaning liberal naivete is a truly poisonous cocktail: it produces both a tremendous confidence and an inability to interpret negative reactions as anything other than ignorant fear or politically-motivated ‘anti-science’ malice. Such has been the basic response of the HGDP’s leading lights to the criticism they have faced – they cannot understand what people are getting so upset about, and they are certainly not about to give up their cherished project because of it. On the whole, the naivete of the HGDP is depressingly indicative of the role of the scientist on the modern world stage. In a world as unequal and divided as ours, such naivete is not a luxury we can afford. And naivete combined with arrogance is not innocent, but culpable.
That’s more than one reason. We should all be concerned and remain vigilant about the process and the “findings” of scientists who have a vested interest in particular outcomes and particular processes.