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The BBC's Pallab Ghosh reports
"Many doctors are furious"
 real 28k

Friday, 4 February, 2000, 13:03 GMT
Iceland exploits its genetic history
Gene pool: Iceland's latest natural resource is its people
Gene pool: Iceland's latest natural resource is its people
By the BBC's Catherine Goldwater in Iceland

Land of volcanoes and glaciers, Iceland now has another claim to fame - the people who live there are about to take part in an extraordinary genetic experiment.

The interests of the company are being put first in order to make money

Einar Arnason, Professor of Genetics
It has never been done before and no-one really knows how successful it will be, but it has already divided the country and now the whole world is watching and waiting.

The Icelandic Government has given a licence to a US-funded corporation to set up a genetic catalogue using the medical records on each and everyone of the country's 270,000 citizens.

The information will be stored in a single, computerised database.

The information is valuable because Iceland is probably the most homogeneous society in the world. There has been little immigration since the first Vikings arrived almost 1000 years ago. Icelanders are passionate about their unique identity and very many of them have traced their family trees.
Dr Stefansson receives the medical records
Dr Stefansson receives the medical records
And it is the consistency in the Icelandic gene pool that scientists hope will allow them to track down the causes of genetic diseases back through the generations.

But the project, although given the go-ahead, is steeped in controversy. Never before has an attempt been made to collect and store a nation's genetic heritage. The possibility that foreign drug companies would be allowed to mine this information, even at a considerable price, has split opinion.

Treasure trove

Native Icelander Dr Kari Stefansson is the mastermind behind the project and it is his company, deCode Genetics, that has negotiated the deal.

For 8m and a share in future profits, the Icelandic Government has given the firm permission to set up the treasure trove of data.
DeCode's laboratories will analyse the genetic data
DeCode's laboratories will analyse the genetic data
Aside from ethical issues surrounding what some see as a commercial monopoly of sensitive information, the move raises questions about privacy, informed consent and the rights of the individual versus the state.

Concerned doctors and academics have set up an organisation called Mannvernd (The Human Protection Association) with the sole aim of stopping the database going ahead.

One of their founding members, Einar Arnason, is Professor of Genetics at the University in Reykjavik and is alarmed at what has happened: "The interests of the individual which should be first are being put second and the interests of the company are being put first in order to make money."

They believe that without the informed consent of each individual patient the information should not be given out and they want to raise money to mount a legal challenge to the government.

For its part, deCode has allowed individual Icelanders to opt out by filing in a form - but not everyone is satisfied. Also, there are still concerns about whether the security of the database is sufficient to prevent any information leaking out.

Economic benefit

Dr Stefansson remains steadfast in the face of his critics. He believes his company is not only good for the economy, which pleases the government, but has also positioned Iceland as a world leader in genetic research.

He says: "We're studying the information which contains the blueprint for man and I am absolutely convinced that this will revolutionise healthcare not only here in Iceland but worldwide."

Down at the local hot tub where Icelanders traditionally go to unwind after a hard day's work, opinion is divided. Everyone appears to think that selling the information is a good idea in principle but concern remains over whether ethical principles are being pushed to one side for the sake of commercial interests.

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See also:

11 Jan 00 | Sci/Tech
Human gene race nears end
10 Dec 99 | Sci/Tech
The mysteries of creation
23 Nov 99 | Sci/Tech
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