Genome project causes controversy
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.