By Anthony Brown
Aboriginal and Torres Strait Islander communities may be included in a scientific project to collect genetic material from the world's endangered indigenous peoples.
The Human Genome Diversity Project is a five-year plan to collect genetic material from genetically distinct human groups across the globe.
However, the project has been questioned by conservationists, indigenous peoples' groups, scientists and aid organisations who are concerned that the communities sampled will not benefit from the research.
According to Dr Simon Easteal from the John Curtin School of Medical Research at the Australian National University in Canberra, the project is still at the planning stage and still requires major funding, but looks like going ahead next year. He anticipates that the school would be the project's base of operations in Australia.
The school's director, Professor Sue Serjentson, is the project's South-East Asia and Pacific coordinator. She is currently in the US.
Australian interest
Easteal said the Human Genome Diversity Project was a spin-off from the Human Genome Project, a US$100 million plan to map the whole human gene sequence. The project managers had a lot of interest in Australia's indigenous people and "certainly they will be approached".
According to the May edition of New Scientist magazine, the idea for the project originated in 1991 from discussions between some of the world's leading geneticists, including Luigi Luca Cavalli-Sforza from Stanford University, Kenneth Kidd from Yale University and Walter Bodmer, president of the London-based Human Genome Organisation (HUGO).
According to New Scientist, they were interested in mapping human genetic diversity to give insights into the origins of modern humans and the movements of ancient populations.
As anatomy, physiology and susceptibility to disease vary from one population to the next, they were also interested in finding out if such variation was caused by human adaptation to local environments or changes in genetic make-up.
At meetings at Pennsylvania State University in October 1992, at the University of Turin in May and in Sardinia in September, scientists drew up a list of 500 human communities they decided to include in the study.
"One criterion for inclusion was imminent danger of extinction. This applies to about half of the selected groups, including the Hazda of Tanzania, the Yukaghir of Siberia and the Onge and Greater Andamanese of the Andaman Islands, Malaysia. Another objective was to choose groups whose genetic make-up could shed light on specific anthropological problems, such as how the Americas were first colonised, or the history of the Bantu expansion in Africa 2000 years ago", New Scientist said.
Project scientists plan to take blood, hair roots and oral scrapings from each representative group so that they can extract the DNA. The Rural Advancement Foundation International (RAFI), an international community aid organisation devoted to helping the developing world develop equitable and environmentally sound agricultural methods, believes the DNA samples will be stored for future research at the American Type Culture Library in Virginia.
RAFI believes that the project will receive a great deal of its funding from the US National Institute of Health (NIH).
According to the Central Australian Aboriginal Congress (CAAC), based in Alice Springs, 12 Aboriginal communities throughout Australia have been chosen to be included in the project.
CAAC project officer Edward Tilton said the communities ranged from Arnhem Land, central Australia, Cape York and the Torres Strait Islands, to Tasmania.
Profit potential
The World Congress of Indigenous Peoples and RAFI believe the project is motivated more by the potential to make profits from medical research than by the pursuit of knowledge.
In a recent newsletter of the Australian Gen-ethics Network, The Gene Report, Jean Christie from RAFI wrote, "The profit potential in indigenous germ plasm was brought home to drug companies this year when 30 people in the isolated Italian town of Limone were found to have a unique gene that codes against many cardiovascular diseases. Swedish and Swiss companies and the University of Milan have applied for patents. If the gene produces a marketable therapy, big profits are likely."
Christie said the US Patents Office could decide that genome diversity samples were patentable, making them extremely valuable to large pharmaceutical companies.
"Such patents may outlive the indigenous peoples from whose hair, blood and guts they are drawn. The NIH has already applied to patent more than 2800 genes and DNA fragments from the Human Genome Project's study of brain tissue, and HUGO teams in England and Japan plan to file for patents", she said.
When asked about the commercial use of the samples, Professor Hank Greely from Harvard University, who is in charge of the Genome Diversity Project's legal aspects, said it would be hard to exclude it.
'Better use'
Christie said that money spent on collecting gene samples from threatened indigenous peoples could be better used to help these people. She said the project took it for granted that these people would eventually die out and had no consideration for helping them to survive or to improve their living standards.
"The average cost of processing each sample will be US$2300, more than the per capita income of 110 countries and greater than the lifetime income of most of the people who would be sampled. Yet, products and processes developed from their tissue would be valuable", Christie said.
The New Scientist has reported that a growing number of anthropologists are opposed to the project because they fear that their science is losing touch with social and cultural issues and becoming more concerned with genetic determinism. The magazine quotes Alan Swedlund, head of the anthropology department at the University of Massachusetts, who says the project managers "have hitherto ignored the plight of aboriginal peoples but now want to swoop in, collect blood for their own scientific goals, and then leave people to their fate".
Edward Tilton agrees that the project is immoral "in the sense that it's just treating people as mere sources of genetic information". Tilton says Aboriginal people have not yet been consulted about their expected involvement in the project and that there appears to be no benefit to them.
"Aboriginal people will have no control over these samples, which will be frozen somewhere in the US where they'll be kept for decades, even centuries. So people won't have any control over how their genes are used. It's very much a continuation of the research on people rather than the research with people approach."
Tilton also said that he was not impressed with the project's background research. "If you read through what they're proposing, it is actually made nonsense of by the communities they've chosen. For example, they identify Tasmania as a single community. But we all know that Tasmania is not a single community. Their actual background research is very poor."
Tilton said Aboriginal and Islander health service agencies throughout Australia had relayed their concerns to the federal Department of Health and to the Aboriginal and Torres Strait Islander Commission.