Privacy in Iceland : LUSENET : TB2K spinoff uncensored : One Thread

Iceland sells everybodys' medical and (almost all) genealogical records.

Still working on the hot linking.

-- Link (
mousie@mymousehole.moc), March 05, 2000



Here's your Link.

This is an interesting issue since Iceland has such a genetically "pure" population and geneology records that go back over a thousand years. I think that scientist could learn a lot by studying everyone's medical history. OTOH, simply because it's possible doesn't mean it will result in the greater good. I fear the day when we we will be able to classify people by what their DNA says they're capable of. That, I'm afraid, will be the ultimate result of genetic research.

-- Jim Cooke (, March 05, 2000.

Iceland sells its medical records, pitting privacy against greater good March 3, 2000 Web posted at: 4:09 a.m. EST (0909 GMT)

From staff reports

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."

-- Tommy Rogers (Been there@Just a, March 05, 2000.

Having a central data bank of genetic and medical information is all well and good for the researchers, but this kind of thing never stops there. Other people eventually get their hands on the information, and make uses of it for which it was never intended. Information is knowledge, knowledge is power, and power corrupts.

For example, what could be more innocuous than a state's driver license data base? It turns out that some enterprising 'crat sells the information to a marketing company, who in turn targets their advertising selectively to the recipients. It all seems pretty benign, unless you happen to be the one who's inundated by all the unsolicited merchandising crap.

Do you really want your personal genetic information and medical history in some government's data base? I don't. I say enough's enough. I need my privacy.

-- Craig (, March 05, 2000.

Moderation questions? read the FAQ