Tempest in Iceland's gene pool

Controversy over a private company's plan to compile the genetic history of an entire population.

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. "I'm convinced that most people in this world are willing to make sacrifices when it comes to our medical privacy to make sure that we can advance medicine [for] our children and grandchildren."

DeCode says its combined data-processing system could assist in developing new and more effective treatments for some diseases. It has also put Iceland at the forefront of a growing high-tech industry and attracted dozens of Icelandic scientists back home.

The company, which is registered in Delaware, will pay Iceland $12 million for the exclusive right to create and operate the healthcare database for 12 years; Iceland could earn up to an additional $1 million a year in shared profits and its healthcare system can use the database for free. DeCode also has a $200 million research collaboration with Swiss pharmaceutical giant Hoffmann-La Roche, deCode's largest shareholder.

The company's project has the support of more than 75 percent of Iceland's population, according to public opinion polls, and most of the country's political leaders. But Iceland's medical community opposes it, raising concerns that the data could one day be used by insurance companies and employers against individuals whose genes are linked to possible disease.

One-third of the country's physicians have declared they will not turn over patient records, despite deCode's privacy assurances.

"Nobody was asked if they want their health information released because the law says you don't have to," says Gudmundur Bjornsson, a hospital director and former head of the Icelandic Medical Association. "We offered to help deCode obtain the informed consent of every Icelander alive, but they said no."

Icelanders can opt out of the healthcare database by filing special paperwork. But those who do not file - including the deceased, newborns, and the mentally ill - are presumed to give consent.

As in the US, genealogical information here is considered public domain. Iceland has been criticized by many bioethicists for its use of "presumed consent" in the healthcare database.

But Dr. Stefansson says this is in line with healthcare research practice throughout the Western world. "In the United States, you have enormous databases containing the health records of millions of individuals," he says. "They're also based on presumed consent."

George Annas, head of the health law department at Boston University's School of Public Health, says that generally medical records in the US can be used without a patient's consent, provided that individuals cannot be identified by researchers. Use of children's records is generally considered unethical, he says.

"What's unusual here is that Stefansson will be rolling that information together with genetic and genealogical data," Professor Annas says. "He doesn't know where that's going to take him."

For the medical ethics field, it's uncharted waters. "Iceland gives the whole world an opportunity to think through issues that nobody has been able to do yet," Annas adds. "It's a good opportunity at fairly low cost to try to sort through these issues."

(c) Copyright 2000. The Christian Science Publishing Society

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