It was an attempt to preserve the marvellous genetic diversity of the human species. It would shed light on our evolutionary past and open new avenues to treat many of today's most intractable diseases.
That was the dream. The reality is that 10 years after its inception, the Human Genome Diversity Project has all but disintegrated, having fallen victim to accusations of racism and commercial exploitation.
It is a far cry from the idealistic intentions of the scientists who proposed the project. They envisaged the establishment of a genetic museum to store the DNA codes of the many hundreds of indigenous peoples and so preserve a wealth of information on the diversity of the human race.
Such diversity is fast disappearing as once-isolated tribes migrate, intermarry or simply die off. It is under threat from war, urbanisation and creeping globalisation.
But, to the dismay of the project's mentors, many of the indigenous people themselves did not want to be part of their dream. "You want to preserve our genes," was the typical refrain, "but you don't want to preserve us."
The better-known Human Genome Project was an attempt to decipher the DNA code of the typical human being. The Human Genome Diversity Project was aimed at understanding the nature of the subtle genetic differences between people.
Where the diversity scientists went wrong was in underestimating the sensitivities attached to studying these genetic differences.
Kenneth Kidd, a veteran geneticist at Yale University and one of the founders of the diversity project, said he did not anticipate the way the project would be received. "The blatant lies that went on," Professor Kidd said. "I was insulted to my face. The project was called unethical when it was an attempt to put the research on an ethical basis. To study differences is not racist. Racists don't need to study differences, they are doing just fine as they are."
Luigi Luca Cavalli-Sforza, professor of genetics at Stanford University in California, who put forward the idea to gather DNA from the world's indigenous peoples, believes the project became a pawn of political activists.
"We were misinterpreted or maligned by a few organisations with many false accusations, ranging from inexisting dangers to inexisting financial interests and collusions with biotechnology industries," Professor Cavalli-Sforza said. "It is difficult to avoid the doubt that they used us for their totally unrelated political aims. People interested in fighting racism can only recognise our strong contribution to this fight."
Although the genetic differences between people are relatively small compared with most other species, they can provide valuable insights into human evolution by showing how aboriginal groups diverged from a common ancestor.
The differences could also help medical researchers to discover genetic predispositions to disease and what makes some ethnic groups apparently more resistant – or susceptible – to particular illnesses.
It was this aspect – with its potential for commercial exploitation and gene patenting – that raised some of the greatest suspicions. Opponents argued that the diversity project would be used by Western drug companies to develop and patent lucrative new treatments based on the DNA of the poor and dispossessed.
In 1995, some aboriginal groups, mainly from North and South America, voiced their opposition to a project which, they said, "intends to collect and make available our genetic materials which may be used for commercial, scientific and military purposes ... We demand the Human Genome Diversity Project and any other such scientific project cease any attempts to seduce or coerce participation in their projects through promises of benefits and financial gain in order to obtain consent and participation of indigenous peoples".
Debra Harry, a member of the Northern Paiute Nation in America and one of the most articulate opponents of the project, said the study would be a licence for "bioprospectors" to stake legal claims on the natural genetic resources of aboriginal groups.
"Once genetic materials are stored in gene banks, they will be available in perpetuity, with minimal control, to anyone requesting access," she said.
"Medical applications are in fact likely to result from the eventual research, manipulation and commercialisation of the genetic materials. But they will most likely come in the form of pharmaceuticals or expensive genetic therapy techniques. Possible benefits will go only to those who can afford the high costs of such treatments."
Then, in November 1997, 30 groups representing indigenous peoples in North, South and Central America produced the Ukupseni Declaration, which marginalised the project even further. "This research and other research projects on indigenous genomes go against human life and in particular violate the genetic integrity of indigenous peoples," the declaration said.
Stung by the mounting criticism, the project's leaders compiled a lengthy justification based on the study's potential benefits. But by now any hope of raising the funding had all but disappeared. The original target was for $25m, but in 1996 a government committee of 17 scientists had recommended much more limited support and stipulated it should only be for American projects.
Virginia Dominguez, professor of anthropology at the University of Iowa and a member of the committee, made her views plain. "Nowhere in the report does our committee endorse the humane human genetic diversity project," she said dismissively.
Without a groundswell of support, the funding dried up and the project was left to wither. To this day, Professor Kidd remains convinced of its merits. Based on the distinct languages in the world – excluding dialects – there were something near 7,000 indigenous groups, he said. The aim was to collect tissue samples from as many of these groups as possible using standardised techniques so that any scientist anywhere in the world could access the DNA databank.
"In many cases cultures are dying out, not because people are dying but because their youngsters are moving to the cities," Professor Kidd said.
"There is this global urbanisation and that's not something that any scientist can stop. By trying to get samples of these small indigenous groups before they amalgamate we are preserving a window into the past."
Professor Cavalli-Sforza said that knowing and preserving human genetic diversity was essential if the full benefits of the Human Genome Project were to be realised. "Without a detailed study of individual and group variation it will remain largely useless," he said.
The diversity project may go ahead in a more limited form. There is a plan to build a smaller databank based on DNA samples from about 200 different ethnic groups that have been collected over a number of years on a piecemeal basis.
Professor Kidd said. "One of the hopes of the diversity project was to develop a standardised protocol so that we are able to share data. We've been prevented from doing that on the scale we envisaged. It's extraordinarily sad."Reuse content