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Iceland's Dilemma: Privacy Versus Progress

A small Icelandic startup has been granted a 12-year license to create and manage adatabase of the entire nation's medical and genetic records. Can it make medical history without violating patient privacy?

By Stephanie Overby

July 15, 2001 — CIO — The first thing you see on the Icelandair video screen after takeoff on the flight from the United States to Keflavik International Airport isn’t a sweeping tour of Iceland’s famous glaciers, geysers, healing hot springs or vast lava fields. It isn’t even an introduction to the country’s lucrative fishing industry or its legendary Norse sagas. It’s a three-minute presentation on Iceland’s newest national treasure, DeCode Genetics.

It’s not your average airplane fare, but DeCode is not your average company. Since its founding in 1996, the U.S. genomics company headquartered in Reykjavik has become as much a part of the landscape there as Iceland’s natural wonders, history and culture. DeCode gained celebrity status last year when the Icelandic government granted it an exclusive 12-year license to create and manage an electronic database of the country’s medical records, previously scattered in clinics around the island. More important, the license also permits DeCode to cross-reference that data with genetic and genealogical information it is collecting on individual Icelanders. As a result, a private company now has unprecedented access to almost every Icelander’s most intimate personal information.

The embarrassment of data riches puts DeCode at an advantage over any other company doing similar genetic population studies. And DeCode has capitalized by developing sophisticated software tools to locate genetic variations that may be found in a number of diseases. The company’s goal is to discover then market new drugs and diagnostic tests for those ailments.

Last October, for example, the company announced the discovery of a gene it believes is linked to schizophrenia. DeCode scientists studied DNA samples from 400 Icelandic schizophrenia patients and their unaffected family members to locate genetic variations believed to be involved in the disorder. DeCode made that discovery while working with the Swiss drug giant F. Hoffman-La Roche in what observers say is the largest deal ever between a pharmaceutical company and a genomics company.

Still, DeCode’s success is far from certain. Indeed, the fact that the company has been granted state-sanctioned access to personal information has sparked an intense controversy at home and abroad. Mannvernd, an Icelandic grassroots organization, plans to take the company to court for violating Icelanders’ right to privacy. One-third of the doctors belonging to the Icelandic Medical Association are refusing to hand over medical records to the database without first obtaining their patients’ written consent. So while DeCode is forging ahead in true Viking fashion, its path is strewn with roadblocks as large as the boulders that pockmark this remote island. Companies worldwide are watching closely. After all, if DeCode can overcome the political and ethical barriers to using sensitive medical data, its success will provide priceless lessons to every organization seeking to mine personal data for profit.

 

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