The Genographic Project
Phoenix, Arizona, is becoming one of the USA’s hottest tourist cities:
with more than 300 days of sunshine a year and great opportunities for
shopping and fine dining, and for exploring the surrounding region’s
unique natural and cultural heritage, it has been attracting increasing
numbers of visitors during the past decade. But early next year,
the city will become the focus of international attention when Maricopa
County Superior Court hears two of the most controversial lawsuits to
have been launched against the scientific community in recent
years.
The two cases, one brought by 72 members of the Native American Havasupai tribe and the other by the tribe as a whole, accuse a University of Arizona geneticist of using their blood for research without their authorisation. The tribe claims that between 1990 and 1994, Therese Markow, currently director of the university’s Center for Insect Science, and two colleagues collected almost 400 blood samples under the pretence of helping the tribe to fight high levels of diabetes and subsequently used them, without permission, to study schizophrenia, inbreeding and human migration.
Both suits name Arizona State University, where Markow and her colleagues carried out her research, as well as the University of Arizona, the Arizona Board of Regents and Stanford University, where Markow allegedly sent other samples. They are claiming ethical violations, including breach of trust, fraud and violation of tribal members’ civil rights, and are asking for a combined total of US$75million in damages. The case comes at a significant moment.
Since the early 1990s, an increasing number of lawsuits have seen indigenous peoples attempting to fight back against alleged exploitation by Western geneticists and anthropologists eager to analyse their DNA.
Earlier this year, the UN became involved in the row, when its permanent Forum on Indigenous Issues called for the suspension of the most ambitious study into the origins of human genetic diversity ever undertaken.
The debate is a fascinating one. On one side are some of the world’s most distinguished anthropologists and geneticists, striving to find answers to fundamental questions about our species’ origin and searching for cures to a host of genetic diseases. Their research, they say, is of universal value to humanity.
On the other side are some of the world’s most endangered communities, who are struggling to preserve their cultural integrity, to retain their ancestral lands and, in some cases, to survive. Such research, they argue, is a new chapter of an old story of extractive, ‘helicopter’ science, where researchers from wealthy countries have profi ted from indigenous knowledge and culture while their subjects have received no benefit.
Not only does it abuse indigenous peoples’ human rights, they say, its results could have dire implications for their future security. So who is right? Should we uphold the rights of indigenous peoples at the expense of pioneering scientific research? Or should we forsake the rights of the minority for the sake of the greater good?
Where did we come from?
In May this year, scientists from the Wellcome Trust Sanger Institute near Cambridge published a detailed analysis of the largest chromosome in the human genome. In doing so, they marked the end of ten years’ work and the fi nal chapter of the Human Genome Project, an international research initiative to map all of our genes.
The work was celebrated the world over: as well as representing a landmark in the study of genetics, it provided the opportunity for researchers to gain new insights into genetic illnesses such as various cancers, high cholesterol, Parkinson’s disease and Alzheimer’s.
Around the same time, another groundbreaking study into human genetics was dealt a signifi cant blow when the UN Permanent Forum on Indigenous Issues (UNPFII) recommended that it should be suspended and its objectives investigated by the World Health Organization and the Human Rights Council.
Launched in 2005, the Genographic Project is a US$40million (£21.6million) collaboration between the National Geographic Society (NGS) and IBM. Its aim is to map how humankind populated the planet by collecting and analysing the world’s largest collection
of human DNA. Its international team of researchers will examine the distribution of certain genetic markers and the order in which they occur, in an effort to fi gure out how we’re all related and, ultimately, where we all came from.
To date, archaeologists and geneticists have pieced together an outline of early human history. It’s pretty widely accepted that modern humans evolved in Africa and remained on the continent until around 60,000 years ago. At that point – when there was a small population of only a few thousand – they started to leave Africa and populate the rest of the planet.
Using a combination of archaeological evidence and a limited amount of DNA testing, scientists have been able to sketch out early migratory routes (see map, above). One followed the southern coast of Asia and reached Australia around 50,000 years ago. Later paths probably proceeded inland through the Middle East to the steppes of Central Asia and, ultimately, to Europe and the Americas.
But the rest is less clear. And this is where the Genographic Project comes in, says its director, Spencer Wells. “By collecting a large set of samples, we’re aiming to fill in the gaps in this story,” he says. “We’re looking at things that range from the earliest history of our species – where in Africa we might have originated and early population movements within Africa – through the ancient Palaeolithic wanderings of our species to much more recent events, such as the impact of historical events and historical empires on the
gene pool.” Preliminary work, for example, has looked at the genetic impact of Ghengis Khan and the Mongol Empire.
The project operates through 11 regional sampling centres on five continents, where local specialists are able to direct its objectives. “In India, for instance, we’re looking at the impact of the caste system on genetic diversity; in East Asia, we’re examining the impact of rice agriculture; and in Southeast Asia and the Pacific, we’re looking at the spread of more than 400 Indian languages, including the origin of the Dravidian speakers. In Australia, we’re trying to correlate the indigenous songlines – the sung oral histories, which seem to link up certain populations – with the genetic patterns.”
At the project’s core will be samples of DNA from 100,000 indigenous people – around 50–100 individuals from 1,000–2,000 distinct populations. As Wells explains, indigenous peoples’ ancestral DNA is easier to interpret and provides a starting point for understanding human history. “Ideally, we want to study peoples who have been living in the same place for thousands of years. Because indigenous peoples haven’t moved around as much as the rest of us have, they have retained the distinct patterns of DNA to a greater extent than those who live in some of the world’s bigger cities, where there
tends to be more mixing.”
The Vampire Project
While the Genographic Project is certainly the largest and most high-profile initiative of its kind, it isn’t the first. Its roots lie in the Human Genome Diversity Project (HGDP). First proposed by the eminent geneticist Luca Cavalli-Sforza and a group of colleagues in a letter to the scientific journal Genomics in 1991, the HGDP aimed to promote worldwide research into human genetic diversity in an effort to understand how and when patterns of diversity were formed. It planned to collect DNA from 722 distinct indigenous groups in an attempt to disentangle the genetic complexities present in many modern-day societies.
Cavalli-Sforza proposed to use these samples to create a central DNA bank from which ‘cell lines’ could be created to supply researchers around the world. As the HGDP developed, an additional goal was identified: to collect information that would be useful for medical research.
However, collecting the samples proved impossible. Nicknamed the Vampire Project, the HGDP caused uproar among indigenous rights
activists during the mid-1990s. Some of their objections echoed those relating to intellectual property rights and the issues surrounding bioprospecting – notably, that pharmaceutical companies would patent indigenous peoples’ DNA and use it to pursue their own commercial interests. Others related to the very act of taking and analysing blood. According to the International Indian Treaty Council (IITC), the collection and manipulation of human DNA offends the religious and spiritual beliefs of many indigenous peoples who value the sacredness and interrelationship of all life and believe that the human genome has its own spirit.
“A people’s genetic material collectively belongs not only to the living community of today,” wrote the IITC in a paper submitted to the UN Working Group on Indigenous Peoples in 1998, “but to the ancestors from which they were passed down and the children who will one day inherit them. The unique genetic imprint of a people is also inextricably tied to the water, land, plants and animals with which that people shares its ecosystem and upon which it depends
for its physical subsistence and spiritual survival… It cannot be sold, altered or manipulated without potentially causing grave harm to
the entire community, now and in the future.” There were even fears that indigenous peoples who gave up their DNA would be vulnerable to ethnically targeted biological weapons.
Overriding all of these concerns, however, was the claim that the project would contravene one of the fundamental principles of medical ethics. First established in the Nuremberg Code in 1945 as a reaction to the Nazis’ experiments on the Jews and other vulnerable populations during the Second World War, this states that no medical experiments should be performed on humans without their free, prior and informed consent.
According to the IITC, subsequent and repeated breaches of this principle in experiments on indigenous peoples indicated it wasn’t a primary concern for many scientists. “Today, sources of human cells and genetic materials being studied and sold by the bio-technology industry include tissues obtained from medical studies…, surgical procedures (including infant circumcisions and abortions), autopsies, and even ancestral remains unearthed by archaeologists,” it wrote.
The justification for the HGDP also caused great offence among indigenous communities. Cavalli-Sforza and his colleagues had emphasised the urgent need for such a study. “The populations which can tell us most about our evolutionary past… are being rapidly merged with their neighbours… destroying irrevocably the information needed to reconstruct our evolutionary history,” they wrote. “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.”
A valid point, it might seem. But the activists wanted to know why there was so much interest in saving the genes of indigenous peoples and not the peoples themselves.
Ethical standards
Indigenous peoples claimed victory when the HGDP abandoned its plans to collect new material during the mid-1990s, after UNESCO’s
International Bioethics Committee refused to support the project. However, the debate was resurrected with the launch of the Genographic Project in April last year.
From a distance, it appeared that it was an attempt to resuscitate the HGDP: not only were some of its objectives the same, but Wells had studied under Cavalli-Sforza at Stanford University during the mid-1990s and had invited his former supervisor to join the project’s advisory board.
However, the NGS has gone to great lengths to distance the Genographic Project from the HGDP. “There is no medical research of any kind in the Genographic Project,” says a statement from the project’s communications director, Lucie McNeil. “It is non-governmental, nonprofit, and non-political. We will not patent any genetic data resulting from the project. All the information belongs to the global community and will be released into the public domain
once the research is published.”
Marketed as “a true collaboration between indigenous and traditional peoples and scientists”, the project has emphasised its ethical standards from the outset. “Before any fieldwork begins,” says McNeil, “we have been and will continue to seek advice and counsel from leaders and members of indigenous and traditional communities about their voluntary participation.”
As well as furthering scientific research, she says, the project has a Legacy Fund that will “provide tangibles to indigenous and traditional peoples in support of their aspirations to promote and protect their cultures. The fund will be directed primarily toward education initiatives, cultural conservation and linguistic preservation and revitalisation efforts.”
It seems that this approach has paid dividends. By last July, the project had collected more than 8,000 samples from around 80 indigenous populations. “We have encountered little resistance to the project in the field, where we are able to explain the project directly to prospective participants,” says Wells. “The vast majority of those we have approached – more than 95 per cent – have agreed to participate. In parts of North America and Russia, we’ve even had communities approaching us. Those who have refused have done so because of a fear of needles or something, not because they object to the project.”
By and large, he says, participants are not only happy to give samples, they are eager to receive the results. “These people want to incorporate this information with what they already knowabout their history. There are many people who have a clear sense of where they came from and they perhaps want to test some of these ideas
using genetics. Other people have no idea where they came from. They just have stories, and often conflicting stories.”
Many of the project’s participants endorse this opinion. Sougoui, for example, a member of the Toubou people in northern Chad who
gave samples last year, says: “The Genographic Project is a great opportunity for us, the Toubou, because we are a people who are extremely interested in our origins… According to Toubou legend, we are a people who came from different places. This is a question that we continually talk about. We are anxiously waiting for the results of this study to answer this question for us. It is important for us as Toubou to know where we came from, how we got separated from other peoples, and how we actually fit into the world God created.”
So if indigenous peoples are not only happy to participate, but are taking an active interest in the Genographic Project, why has the UNPFII recommended that it should be suspended?
Pressing concerns
Shortly before the Fifth Session of the UNPFII, the Indigenous Peoples Council on Biocolonialism (IPCB) handed a petition to the NGS that contained the names of 868 indigenous peoples, indigenous rights activists and other supporters calling for an end to the Genographic Project.
One of the two groups’ main objections to the Genographic Project relates to its benefits to participants. “According to human rights
law, the benefits of participating in such an experiment should equal or outweigh the risks,” says Debra Harry, the IPCB’s executive director. Yet, despite the NGS’s claims, she says, the project isn’t serving indigenous peoples’ best interests.
Victoria Tauli-Corpuz, chairperson of the UNPFII, shares this opinion. It’s a question of priorities, she says. “Our history is not the main thing that indigenous peoples are concerned about at the moment,” she says. “I’m sure there are some populations who don’t know their origins. But most indigenous peoples have our own genealogies, our own myths and stories about where we came from. In fact, that is an important part of what makes us indigenous, because we know we have historical accounts of where our people came from.”
Many indigenous peoples currently have far more pressing concerns, she says. “All over the world we are being killed, we are being displaced. And while this is going on, the Genographic Project is spending millions of dollars on a study that hopes to show the patterns of population migrations. It’s hard to see how this is a
collaboration. Why don’t they bring that money to us and ask us what we really need?”
The NGS claims that the Legacy Fund is there to address some of the problems facing indigenous peoples. The fund’s Charter Document explains that it will provide grants of up to US$100,000 to individuals, groups and organisations to empower and build capacity
among communities in an effort to deliver medium- and long-term benefits. So far, almost US$2million has been raised from the sale of
genealogy testing kits to the general public in the USA and elsewhere, and the first round of grant applications is being considered.
But Harry sees it differently. “You don’t need to take blood to preserve culture,” she says. “If they had a true altruistic motivation to protect
indigenous cultures, they wouldn’t be asking for something in return. The fact is that this project hasn’t been designed to help indigenous peoples, but to further Western science. The Legacy Fund is an add-on that is effectively a coercive mechanism to encourage people to participate, and this is totally unethical.”
With no benefits, says Harry, the risks are very real. One of the most serious concerns about research into indigenous peoples’ history and human migration is that the results could undermine indigenous peoples’ claims to their ancestral lands. “Where people have very insecure rights to their territories, to their mechanisms of control of their lives and futures, then we are sceptical about what use would be put to reinterpretation of their links with their lands,” says Marcus Colchester, director of the Forest Peoples Programme. “Indigenous peoples claim that they are the most longstanding people on that land – and therefore have prior claims to it. If the Genographic Project publishes research showing they weren’t there 10,000 or 1,000 years ago, then this gives governments opportunities to sidestep their responsibilities.”
Harry reiterates the point that taking genetic material offends the religious and spiritual beliefs of some indigenous peoples. “One of our big issues with this study is that it promotes research on the remains of our ancestors, which of course requires destructive analysis,” she says. “And there’s no way we could support or participate in that kind of research.”
However, the NGS has made it clear that a large part of the project’s work is devoted to obtaining free, prior and informed consent from prospective participants. “When you approach these populations, the first thing you do is explain what it is you’re hoping to do,” explains Wells. “You treat people as people. They are fully capable of making decisions about how they want a piece of their body to be used. So you talk to them about what you want to find out and what they want to find out, and if they agree to participate, you take a sample.” Without consent, they don’t take any samples.
So why is there such a difference of opinion between indigenous rights groups and those who have already participated in the project? Are the activists simply banging drums? Or is the Genographic Project hiding something?
Wells believes it’s about politics. “Eighty-two per cent of the 868 signatures on the IPCB petition were from North America and signed
in direct response to an inaccurate summary of the project’s aims and methodologies,” he says. “Many of them were from academics or indigenous rights advocates, and not from indigenous people per se.
“There are an estimated 300 million indigenous people in the world today, so 868 isn’t a huge number. On the other hand, we have 8,000-plus indigenous people from around the world who have already participated.” In other words, he believes that the opposition to the project is coming from a tiny minority who have misunderstood the facts and don’t share the views of the majority.
However, Tauli-Corpuz feels that such an explanation is somewhat disingenuous: the fact that the UNPFII’s members and the signatories of the petition hold a different point of view is what makes their opinion so important. “There are many implications of these projects that communities are not always aware of. I would be very interested to know, for example, whether the Genographic Project warns participants about the potential threats to their land security.”
And although the NGS claims that the project involves no medical experiments or commercial interests, she says, this is still a serious concern for many representatives of indigenous institutions, because none of these institutions were involved in the project’s design or were subsequently informed about its intentions.
“During the meeting of the Permanent Forum,” explains Tauli-Corpuz, “many of the members who are leaders of their own organisations from different countries – including some where the project has already made collections – were raising this point [that they hadn’t been consulted]. They were saying: ‘We don’t know about this project and we don’t believe its claims in terms of what it can achieve. We’ve had experiences in the past of our genetic materials being collected without our knowledge, so we don’t like this project.’”
And this appears to be the key issue. Whether or not the project has commercial interests or medical applications is, in a way, a secondary concern. The fact is that the Genographic Project simply hasn’t sought consent from the appropriate institutions. “It is impossible for all indigenous peoples to be aware of all the implications of this project,” says Tauli-Corpuz, “so there is a danger that the consent process could be manipulated by interested parties. It is our responsibility as indigenous institutions to know what all the
possible implications are for indigenous peoples and to have a regulatory function.”
From this perspective, the project’s claim to be a true collaboration between indigenous peoples and scientists appears somewhat dubious. For that to be the case, says Tauli-Corpuz, representatives of indigenous institutions who are aware of all of the implications should be involved in the consent process.
McNeil and Wells are eager to point out that they want to keep an open dialogue. “We’ve spoken to many of the people who were involved in drafting [the UNPFII recommendation] and are more than happy to have open consultations in the future to explain the project’s progress and methodologies.”
But according to Harry, this is too late. “If the Genographic Project were a true partnership, as they claim, they would have sat down with indigenous peoples to find out whether there was any genetic research that could address our current needs, and not just the interests of Western science. You have to start at that point, rather than after the project has been designed.”
The project’s lack of respect for indigenous institutions hasn’t helped to improve the bad faith left over from history, says Colchester. “There has been such a history of abuse and lack of consultation and misuse of human remains and blood samples and so on that there is now a near unbreachable gulf of trust between scientists and indigenous people, which means that new projects are running into this problem.”
As long as indigenous peoples continue to be exploited, to fail to have their rights recognised and to see their own authorities not taken seriously, he continues, then the suspicion and resentme t that there is about these kinds of initiatives will continue to make them impossible.
This situation, he says, reflects the fundamental flaw in the relationship between nation states and indigenous peoples. “Once and if indigenous peoples are accepted as legitimate societies with their own rights to their lands and resources, and their rights to represent themselves through their own institutions, then it’s possible that scientists would be able to enjoy a better relationship as emissaries of other societies going to these places. But, unfortunately, we’re still in a historical moment when indigenous peoples’ rights are not being widely recognised and, as a result, they are rightly suspicious of all kinds of external interventions and manipulations, which have rarely done them much good, and have often been done in the name of indigenous peoples’ interests and then proven to be quite the opposite.”
September 2006 pp 43 - 53
The two cases, one brought by 72 members of the Native American Havasupai tribe and the other by the tribe as a whole, accuse a University of Arizona geneticist of using their blood for research without their authorisation. The tribe claims that between 1990 and 1994, Therese Markow, currently director of the university’s Center for Insect Science, and two colleagues collected almost 400 blood samples under the pretence of helping the tribe to fight high levels of diabetes and subsequently used them, without permission, to study schizophrenia, inbreeding and human migration.
The Genographic Project
Start the slideshow (9 pictures)
Both suits name Arizona State University, where Markow and her colleagues carried out her research, as well as the University of Arizona, the Arizona Board of Regents and Stanford University, where Markow allegedly sent other samples. They are claiming ethical violations, including breach of trust, fraud and violation of tribal members’ civil rights, and are asking for a combined total of US$75million in damages. The case comes at a significant moment.
Since the early 1990s, an increasing number of lawsuits have seen indigenous peoples attempting to fight back against alleged exploitation by Western geneticists and anthropologists eager to analyse their DNA.
Earlier this year, the UN became involved in the row, when its permanent Forum on Indigenous Issues called for the suspension of the most ambitious study into the origins of human genetic diversity ever undertaken.
The debate is a fascinating one. On one side are some of the world’s most distinguished anthropologists and geneticists, striving to find answers to fundamental questions about our species’ origin and searching for cures to a host of genetic diseases. Their research, they say, is of universal value to humanity.
On the other side are some of the world’s most endangered communities, who are struggling to preserve their cultural integrity, to retain their ancestral lands and, in some cases, to survive. Such research, they argue, is a new chapter of an old story of extractive, ‘helicopter’ science, where researchers from wealthy countries have profi ted from indigenous knowledge and culture while their subjects have received no benefit.
Not only does it abuse indigenous peoples’ human rights, they say, its results could have dire implications for their future security. So who is right? Should we uphold the rights of indigenous peoples at the expense of pioneering scientific research? Or should we forsake the rights of the minority for the sake of the greater good?
Where did we come from?
In May this year, scientists from the Wellcome Trust Sanger Institute near Cambridge published a detailed analysis of the largest chromosome in the human genome. In doing so, they marked the end of ten years’ work and the fi nal chapter of the Human Genome Project, an international research initiative to map all of our genes.
The work was celebrated the world over: as well as representing a landmark in the study of genetics, it provided the opportunity for researchers to gain new insights into genetic illnesses such as various cancers, high cholesterol, Parkinson’s disease and Alzheimer’s.
Around the same time, another groundbreaking study into human genetics was dealt a signifi cant blow when the UN Permanent Forum on Indigenous Issues (UNPFII) recommended that it should be suspended and its objectives investigated by the World Health Organization and the Human Rights Council.
Launched in 2005, the Genographic Project is a US$40million (£21.6million) collaboration between the National Geographic Society (NGS) and IBM. Its aim is to map how humankind populated the planet by collecting and analysing the world’s largest collection
of human DNA. Its international team of researchers will examine the distribution of certain genetic markers and the order in which they occur, in an effort to fi gure out how we’re all related and, ultimately, where we all came from.
To date, archaeologists and geneticists have pieced together an outline of early human history. It’s pretty widely accepted that modern humans evolved in Africa and remained on the continent until around 60,000 years ago. At that point – when there was a small population of only a few thousand – they started to leave Africa and populate the rest of the planet.
Using a combination of archaeological evidence and a limited amount of DNA testing, scientists have been able to sketch out early migratory routes (see map, above). One followed the southern coast of Asia and reached Australia around 50,000 years ago. Later paths probably proceeded inland through the Middle East to the steppes of Central Asia and, ultimately, to Europe and the Americas.
But the rest is less clear. And this is where the Genographic Project comes in, says its director, Spencer Wells. “By collecting a large set of samples, we’re aiming to fill in the gaps in this story,” he says. “We’re looking at things that range from the earliest history of our species – where in Africa we might have originated and early population movements within Africa – through the ancient Palaeolithic wanderings of our species to much more recent events, such as the impact of historical events and historical empires on the
gene pool.” Preliminary work, for example, has looked at the genetic impact of Ghengis Khan and the Mongol Empire.
The project operates through 11 regional sampling centres on five continents, where local specialists are able to direct its objectives. “In India, for instance, we’re looking at the impact of the caste system on genetic diversity; in East Asia, we’re examining the impact of rice agriculture; and in Southeast Asia and the Pacific, we’re looking at the spread of more than 400 Indian languages, including the origin of the Dravidian speakers. In Australia, we’re trying to correlate the indigenous songlines – the sung oral histories, which seem to link up certain populations – with the genetic patterns.”
At the project’s core will be samples of DNA from 100,000 indigenous people – around 50–100 individuals from 1,000–2,000 distinct populations. As Wells explains, indigenous peoples’ ancestral DNA is easier to interpret and provides a starting point for understanding human history. “Ideally, we want to study peoples who have been living in the same place for thousands of years. Because indigenous peoples haven’t moved around as much as the rest of us have, they have retained the distinct patterns of DNA to a greater extent than those who live in some of the world’s bigger cities, where there
tends to be more mixing.”
The Vampire Project
While the Genographic Project is certainly the largest and most high-profile initiative of its kind, it isn’t the first. Its roots lie in the Human Genome Diversity Project (HGDP). First proposed by the eminent geneticist Luca Cavalli-Sforza and a group of colleagues in a letter to the scientific journal Genomics in 1991, the HGDP aimed to promote worldwide research into human genetic diversity in an effort to understand how and when patterns of diversity were formed. It planned to collect DNA from 722 distinct indigenous groups in an attempt to disentangle the genetic complexities present in many modern-day societies.
Cavalli-Sforza proposed to use these samples to create a central DNA bank from which ‘cell lines’ could be created to supply researchers around the world. As the HGDP developed, an additional goal was identified: to collect information that would be useful for medical research.
However, collecting the samples proved impossible. Nicknamed the Vampire Project, the HGDP caused uproar among indigenous rights
activists during the mid-1990s. Some of their objections echoed those relating to intellectual property rights and the issues surrounding bioprospecting – notably, that pharmaceutical companies would patent indigenous peoples’ DNA and use it to pursue their own commercial interests. Others related to the very act of taking and analysing blood. According to the International Indian Treaty Council (IITC), the collection and manipulation of human DNA offends the religious and spiritual beliefs of many indigenous peoples who value the sacredness and interrelationship of all life and believe that the human genome has its own spirit.
“A people’s genetic material collectively belongs not only to the living community of today,” wrote the IITC in a paper submitted to the UN Working Group on Indigenous Peoples in 1998, “but to the ancestors from which they were passed down and the children who will one day inherit them. The unique genetic imprint of a people is also inextricably tied to the water, land, plants and animals with which that people shares its ecosystem and upon which it depends
for its physical subsistence and spiritual survival… It cannot be sold, altered or manipulated without potentially causing grave harm to
the entire community, now and in the future.” There were even fears that indigenous peoples who gave up their DNA would be vulnerable to ethnically targeted biological weapons.
Overriding all of these concerns, however, was the claim that the project would contravene one of the fundamental principles of medical ethics. First established in the Nuremberg Code in 1945 as a reaction to the Nazis’ experiments on the Jews and other vulnerable populations during the Second World War, this states that no medical experiments should be performed on humans without their free, prior and informed consent.
According to the IITC, subsequent and repeated breaches of this principle in experiments on indigenous peoples indicated it wasn’t a primary concern for many scientists. “Today, sources of human cells and genetic materials being studied and sold by the bio-technology industry include tissues obtained from medical studies…, surgical procedures (including infant circumcisions and abortions), autopsies, and even ancestral remains unearthed by archaeologists,” it wrote.
The justification for the HGDP also caused great offence among indigenous communities. Cavalli-Sforza and his colleagues had emphasised the urgent need for such a study. “The populations which can tell us most about our evolutionary past… are being rapidly merged with their neighbours… destroying irrevocably the information needed to reconstruct our evolutionary history,” they wrote. “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.”
A valid point, it might seem. But the activists wanted to know why there was so much interest in saving the genes of indigenous peoples and not the peoples themselves.
Ethical standards
Indigenous peoples claimed victory when the HGDP abandoned its plans to collect new material during the mid-1990s, after UNESCO’s
International Bioethics Committee refused to support the project. However, the debate was resurrected with the launch of the Genographic Project in April last year.
From a distance, it appeared that it was an attempt to resuscitate the HGDP: not only were some of its objectives the same, but Wells had studied under Cavalli-Sforza at Stanford University during the mid-1990s and had invited his former supervisor to join the project’s advisory board.
However, the NGS has gone to great lengths to distance the Genographic Project from the HGDP. “There is no medical research of any kind in the Genographic Project,” says a statement from the project’s communications director, Lucie McNeil. “It is non-governmental, nonprofit, and non-political. We will not patent any genetic data resulting from the project. All the information belongs to the global community and will be released into the public domain
once the research is published.”
Marketed as “a true collaboration between indigenous and traditional peoples and scientists”, the project has emphasised its ethical standards from the outset. “Before any fieldwork begins,” says McNeil, “we have been and will continue to seek advice and counsel from leaders and members of indigenous and traditional communities about their voluntary participation.”
As well as furthering scientific research, she says, the project has a Legacy Fund that will “provide tangibles to indigenous and traditional peoples in support of their aspirations to promote and protect their cultures. The fund will be directed primarily toward education initiatives, cultural conservation and linguistic preservation and revitalisation efforts.”
It seems that this approach has paid dividends. By last July, the project had collected more than 8,000 samples from around 80 indigenous populations. “We have encountered little resistance to the project in the field, where we are able to explain the project directly to prospective participants,” says Wells. “The vast majority of those we have approached – more than 95 per cent – have agreed to participate. In parts of North America and Russia, we’ve even had communities approaching us. Those who have refused have done so because of a fear of needles or something, not because they object to the project.”
By and large, he says, participants are not only happy to give samples, they are eager to receive the results. “These people want to incorporate this information with what they already knowabout their history. There are many people who have a clear sense of where they came from and they perhaps want to test some of these ideas
using genetics. Other people have no idea where they came from. They just have stories, and often conflicting stories.”
Many of the project’s participants endorse this opinion. Sougoui, for example, a member of the Toubou people in northern Chad who
gave samples last year, says: “The Genographic Project is a great opportunity for us, the Toubou, because we are a people who are extremely interested in our origins… According to Toubou legend, we are a people who came from different places. This is a question that we continually talk about. We are anxiously waiting for the results of this study to answer this question for us. It is important for us as Toubou to know where we came from, how we got separated from other peoples, and how we actually fit into the world God created.”
So if indigenous peoples are not only happy to participate, but are taking an active interest in the Genographic Project, why has the UNPFII recommended that it should be suspended?
Pressing concerns
Shortly before the Fifth Session of the UNPFII, the Indigenous Peoples Council on Biocolonialism (IPCB) handed a petition to the NGS that contained the names of 868 indigenous peoples, indigenous rights activists and other supporters calling for an end to the Genographic Project.
One of the two groups’ main objections to the Genographic Project relates to its benefits to participants. “According to human rights
law, the benefits of participating in such an experiment should equal or outweigh the risks,” says Debra Harry, the IPCB’s executive director. Yet, despite the NGS’s claims, she says, the project isn’t serving indigenous peoples’ best interests.
Victoria Tauli-Corpuz, chairperson of the UNPFII, shares this opinion. It’s a question of priorities, she says. “Our history is not the main thing that indigenous peoples are concerned about at the moment,” she says. “I’m sure there are some populations who don’t know their origins. But most indigenous peoples have our own genealogies, our own myths and stories about where we came from. In fact, that is an important part of what makes us indigenous, because we know we have historical accounts of where our people came from.”
Many indigenous peoples currently have far more pressing concerns, she says. “All over the world we are being killed, we are being displaced. And while this is going on, the Genographic Project is spending millions of dollars on a study that hopes to show the patterns of population migrations. It’s hard to see how this is a
collaboration. Why don’t they bring that money to us and ask us what we really need?”
The NGS claims that the Legacy Fund is there to address some of the problems facing indigenous peoples. The fund’s Charter Document explains that it will provide grants of up to US$100,000 to individuals, groups and organisations to empower and build capacity
among communities in an effort to deliver medium- and long-term benefits. So far, almost US$2million has been raised from the sale of
genealogy testing kits to the general public in the USA and elsewhere, and the first round of grant applications is being considered.
But Harry sees it differently. “You don’t need to take blood to preserve culture,” she says. “If they had a true altruistic motivation to protect
indigenous cultures, they wouldn’t be asking for something in return. The fact is that this project hasn’t been designed to help indigenous peoples, but to further Western science. The Legacy Fund is an add-on that is effectively a coercive mechanism to encourage people to participate, and this is totally unethical.”
With no benefits, says Harry, the risks are very real. One of the most serious concerns about research into indigenous peoples’ history and human migration is that the results could undermine indigenous peoples’ claims to their ancestral lands. “Where people have very insecure rights to their territories, to their mechanisms of control of their lives and futures, then we are sceptical about what use would be put to reinterpretation of their links with their lands,” says Marcus Colchester, director of the Forest Peoples Programme. “Indigenous peoples claim that they are the most longstanding people on that land – and therefore have prior claims to it. If the Genographic Project publishes research showing they weren’t there 10,000 or 1,000 years ago, then this gives governments opportunities to sidestep their responsibilities.”
Harry reiterates the point that taking genetic material offends the religious and spiritual beliefs of some indigenous peoples. “One of our big issues with this study is that it promotes research on the remains of our ancestors, which of course requires destructive analysis,” she says. “And there’s no way we could support or participate in that kind of research.”
However, the NGS has made it clear that a large part of the project’s work is devoted to obtaining free, prior and informed consent from prospective participants. “When you approach these populations, the first thing you do is explain what it is you’re hoping to do,” explains Wells. “You treat people as people. They are fully capable of making decisions about how they want a piece of their body to be used. So you talk to them about what you want to find out and what they want to find out, and if they agree to participate, you take a sample.” Without consent, they don’t take any samples.
So why is there such a difference of opinion between indigenous rights groups and those who have already participated in the project? Are the activists simply banging drums? Or is the Genographic Project hiding something?
Wells believes it’s about politics. “Eighty-two per cent of the 868 signatures on the IPCB petition were from North America and signed
in direct response to an inaccurate summary of the project’s aims and methodologies,” he says. “Many of them were from academics or indigenous rights advocates, and not from indigenous people per se.
“There are an estimated 300 million indigenous people in the world today, so 868 isn’t a huge number. On the other hand, we have 8,000-plus indigenous people from around the world who have already participated.” In other words, he believes that the opposition to the project is coming from a tiny minority who have misunderstood the facts and don’t share the views of the majority.
However, Tauli-Corpuz feels that such an explanation is somewhat disingenuous: the fact that the UNPFII’s members and the signatories of the petition hold a different point of view is what makes their opinion so important. “There are many implications of these projects that communities are not always aware of. I would be very interested to know, for example, whether the Genographic Project warns participants about the potential threats to their land security.”
And although the NGS claims that the project involves no medical experiments or commercial interests, she says, this is still a serious concern for many representatives of indigenous institutions, because none of these institutions were involved in the project’s design or were subsequently informed about its intentions.
“During the meeting of the Permanent Forum,” explains Tauli-Corpuz, “many of the members who are leaders of their own organisations from different countries – including some where the project has already made collections – were raising this point [that they hadn’t been consulted]. They were saying: ‘We don’t know about this project and we don’t believe its claims in terms of what it can achieve. We’ve had experiences in the past of our genetic materials being collected without our knowledge, so we don’t like this project.’”
And this appears to be the key issue. Whether or not the project has commercial interests or medical applications is, in a way, a secondary concern. The fact is that the Genographic Project simply hasn’t sought consent from the appropriate institutions. “It is impossible for all indigenous peoples to be aware of all the implications of this project,” says Tauli-Corpuz, “so there is a danger that the consent process could be manipulated by interested parties. It is our responsibility as indigenous institutions to know what all the
possible implications are for indigenous peoples and to have a regulatory function.”
From this perspective, the project’s claim to be a true collaboration between indigenous peoples and scientists appears somewhat dubious. For that to be the case, says Tauli-Corpuz, representatives of indigenous institutions who are aware of all of the implications should be involved in the consent process.
McNeil and Wells are eager to point out that they want to keep an open dialogue. “We’ve spoken to many of the people who were involved in drafting [the UNPFII recommendation] and are more than happy to have open consultations in the future to explain the project’s progress and methodologies.”
But according to Harry, this is too late. “If the Genographic Project were a true partnership, as they claim, they would have sat down with indigenous peoples to find out whether there was any genetic research that could address our current needs, and not just the interests of Western science. You have to start at that point, rather than after the project has been designed.”
The project’s lack of respect for indigenous institutions hasn’t helped to improve the bad faith left over from history, says Colchester. “There has been such a history of abuse and lack of consultation and misuse of human remains and blood samples and so on that there is now a near unbreachable gulf of trust between scientists and indigenous people, which means that new projects are running into this problem.”
As long as indigenous peoples continue to be exploited, to fail to have their rights recognised and to see their own authorities not taken seriously, he continues, then the suspicion and resentme t that there is about these kinds of initiatives will continue to make them impossible.
This situation, he says, reflects the fundamental flaw in the relationship between nation states and indigenous peoples. “Once and if indigenous peoples are accepted as legitimate societies with their own rights to their lands and resources, and their rights to represent themselves through their own institutions, then it’s possible that scientists would be able to enjoy a better relationship as emissaries of other societies going to these places. But, unfortunately, we’re still in a historical moment when indigenous peoples’ rights are not being widely recognised and, as a result, they are rightly suspicious of all kinds of external interventions and manipulations, which have rarely done them much good, and have often been done in the name of indigenous peoples’ interests and then proven to be quite the opposite.”
September 2006 pp 43 - 53
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