Tempest in Iceland's Gene Pool ; Controversy over a Private Company's Plan to Compile the Genetic History of an Entire Population

By Colin Woodard, | The Christian Science Monitor, June 3, 2000 | Go to article overview

Tempest in Iceland's Gene Pool ; Controversy over a Private Company's Plan to Compile the Genetic History of an Entire Population


Colin Woodard,, The Christian Science Monitor


Iceland is a primeval island of frigid deserts, towering glaciers, and barren volcanic lava fields on the fringe of the Arctic Circle. But in a country whose geography is notable for its variety, the population is just as unusual for its sameness.

Iceland's government is looking to tap that largely homogenous gene pool as a profitable resource by approving a major genetics project. But this project is now the subject of an acrimonious ethics debate - here and abroad - that touches many of the core issues surrounding the mapping of the human genome.

The debate has taken on new immediacy as the pace of genetic discovery picked up this week. First came the announcement that efforts to map the human genome were all but complete.

Then, the Edinburgh, Scotland-based company that cloned Dolly the sheep revealed it had taken the process a step further, cloning two lambs, Cupid and Diana, from genetically modified cells. The technique has possible future implications for animal-to-human organ transplants.

Iceland, with an economy traditionally dependent on fishing, is now seeing a boom in the high-tech and service industries. To help fuel biotech growth, the Reykjavik government earlier this year granted a license to a private company to create and operate a computerized database of the entire nation's healthcare records, which date back to 1915.

The company, Reykjavik-based deCode Genetics, plans to cross- reference the healthcare records with genealogical and genetic databases. With the combined system, subscribers to the deCode databases would be able to trace the family relationships of not only almost every Icelander alive, but nearly everyone who has lived here for centuries past.

Iceland has experienced little immigration over the past 1,100 years, so almost all of its 275,000 people are descended from a small group of 9th-century Norse and Celtic settlers.

Icelanders are also passionate genealogists, and researching family trees has long been a national pastime.

Studying such an isolated and well documented population simplifies scientists' efforts to research possible links between family history and certain diseases.

But the Icelandic Medical Association says the project is a serious violation of personal privacy and damaging to the doctor- patient relationship. One physician-led citizen's group, Mannvernd, intends to sue the government and deCode to test the constitutionality of the legislation that made the project possible.

"Iceland's healthcare information has been commercialized and our genetic information has been turned into a commodity," says Petur Hauksson, a clinical psychiatrist and chairman of Mannvernd.

DeCode also has begun collecting blood samples from thousands of Icelanders, with their consent. The DNA in those samples will be isolated, genotyped, and entered into its genetic database. All such information will be encrypted by a government-appointed body to protect individual privacy, the company says.

"The reason we have medicine as it exists today is because our parents and grandparents supported and participated in medical research," says deCode founder and president Kari Stefansson. …

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