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
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. …