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Iceland sells its medical records, pitting privacy against greater good

Gene Therapy

March 3, 2000
Web posted at: 4:09 a.m. EST (0909 GMT)

REYKJAVIK, Iceland (CNN) -- Iceland has sold the medical and genealogy records of its 275,000 citizens to a private medical research company, turning the entire nation into a virtual petri dish in hopes of finding cures to diseases that have afflicted humans for ages.

But the promise of curing disease hasn't stopped critics from worrying about privacy issues created by the sale and storage of personal medical and genetic records.

"In our company," said Kari Stefansson of DeCode, the U.S.- funded firm which bought the records, "we have the genealogy of the entire people for 1,000 years back in time and a computerized record of who is related to whom."

The Icelandic population's unique ability to trace its family trees back to the island nation's first settlers, makes it a prime candidate for this never before attempted mammoth research experiment.

Stefansson says these detailed records make Iceland the ideal laboratory for tracing the flow of genetic information from one generation to another.

He's betting that a vast, centralized data bank of medical and genetic records might offer clues to why certain people tend to develop specific maladies, perhaps offering the world a chance to understand the diseases and then develop cures for them.

But many members of Iceland's medical community are concerned that allowing the nation's genetic information to be sold will breach the trust between doctor and patient.

Some physicians fear their patients might not be as forthcoming about personal information, knowing that it would eventually be stored in the centralized data bank.

The government has allayed those fears somewhat by allowing citizens to opt out of the genealogical data base. So far, only about 5 percent of Icelanders have chosen not to participate.

Other critics are confident the project will fail because, they say, so many doctors are against it. They're predicting physicians will refuse to comply with the law that requires them to deliver new data to the genetic data bank.

Stefansson, a former Harvard professor, offered his own explanation why Iceland should support the experiment.

"Recognize that knowledge is never evil in of itself," he said. "If you run the world by forbidding new discoveries, you are controlling the world in an unpredictable manner. You are putting yourself in the position of God."

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American Society of Gene Therapy
Institute for Human Gene Therapy

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