Iceland sells its genetic history

Gene pool: Iceland's latest natural resource is its people

source: Wired News
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.

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 study the medical records, family trees and genetic information of each and everyone of the country's 270,000 citizens.

This information will be put into a single computerised database. It is valuable because Iceland is probably the most homogeneous society in the world. There has been little immigration there since the first Vikings arrived almost 1000 years ago.

It is this consistency in the Icelandic gene pool that scientists hope will allow them to trace the causes of genetic diseases back through the generations.

But the project, although given the go-ahead, is steeped in controversy. No other country has ever tried to collect, store and then sell a nation's genetic heritage.

Treasure trove

Native Icelander Dr Kari Stefansson is the mastermind behind the project and it is his company, deCODE, that negotiated the deal. For £8m and a share in future profits, the Icelandic Government handed over the treasure trove of data, a move that has angered many.

DeCode's laboratories will analyse the genetic data

Aside from ethical issues surrounding the commercial monopoly of such 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."

"The interests of the company are being put first in order to make money" - Einar Arnason, Professor of Genetics

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 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 place 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.

From:
http://news.bbc.co.uk/hi/english/sci/tech/newsid_630000/630961.stm