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DNA Database
by Rebecca Roberts
Jan. 23, 2001

Iceland sculpture

Almost all of the 270 thousand inhabitants of Iceland are descended from a few Norse and Celtic settlers, and tracing genealogy is a national pastime in Iceland. The relatively homogeneous and well-documented gene pool is a treasure trove for genetic researchers, who are eager to mine the Icelandic genome for hints on how to treat human disease. Last year, an Icelandic biotech company called DeCode was granted an exclusive license to build a data base combining genealogical records, medical records, and DNA. In our second installment of this week's series on Iceland, the World's Rebecca Roberts explores what happens when history and technology collide.

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Iceland is a land of glaciers, volcanoes and violent geothermal activity. (whooshing sound) That's the original geyser, pronounced GAY-seer in Icelandic. It was right near this natural wonder that settlers founded a parliament, somewhere between the years 870 and 930 AD. This blend, of a primitive untamed land with a population always ahead-of-the-curve is still a proud part of the Icelandic identity. So when a local company, Decode Genetics sought public support for a comprehensive health database of every Icelander, national pride was one of the selling points, according to Peter Hauksson, a psychiatrist in Reykjavik.

Hauksson: We saw statements that we had such pure genes, and they were superior to other genes. And maybe some people liked that image, but others find that rather disgusting.

Hauksson is one of them. He objects to the fact that information about all Icelanders, living and dead, is in the database, a combination of medical records compiled since 1915, anonymous DNA samples, and the country's computerized genealogical records. Hauksson and other activists formed a group called Mannvernd, which means human protection. He believes Icelanders are participating in a massive medical research experiment without giving informed consent, a basic requirement for research.

Hauksson: We're told that consent would never be informed, because it's not known how it would be used. But I think it's a minimum requirement that people be told how the plans are, how it would be used in general terms so that people understand the consequences it can have for them and the dangers, and what they will gain.

Stephansson: We would probably not have a health care system as we know it today, if we would not allow people to use this information without informed consent.

That's Kari Stephansson, president and CEO of DeCode. He says informed consent is not only impractical, it's irresponsible. There's always been a social contract here, he says, that assumes modern Icelanders will allow their medical information to be used for the benefit of future generations.

Stephansson: We are privileged to have access to a fairly good health care system because our parents and their parents allowed us to use the information generated when they received health care, to put together or discover new knowledge. And I believe that when we take advantage of this health care system, it is a right that comes with an obligation, a obligation to contribute the same.

In response to pressure from Hauksson's group, the Icelandic government agreed that citizens can opt out of the medical data base. About 20 thousand individuals have done so. And about a third of Iceland's doctors are refusing to turn patients' medical records over to the project. But DeCode's ongoing research into Iceland's genetic past is already yielding results. They've issued press releases touting discoveries of genes related to schizophrenia, osteoarthritis, and psoriasis, to name a few. But none of it has been confirmed by independent, peer-reviewed journals, a standard practice in scientific discovery. Kari Stephansson is not discouraged -- he knows the results of his company's research will reach way beyond Iceland.

Stephansson: So if you just take intelligent advantage of having on a computer database the genealogy of the entire nation, you can derive from it an absolutely unparalleled power in your study of human genetics. And we have done that.

That power stems from the ability to combine medical, genealogical, and genetic data with the very latest in bioinformatics -- the computer manipulation of the data. Stephansson says it's all leading toward a system of individualized medicine.

Stephansson: I know there are those who look at this as being something very indecent. And very close to abuse of personal information, but the fact of that matter that for you to be able to benefit from the concept of individualized medicine, you have to begin to let yourself be treated as a system.

That system includes both your current health status --blood pressure, heart rate,etc., and your genetic background. This concept of human as data system worries doctors like Peter Hauksson. He knows the whole world is watching.

Hauksson: This small nation is being followed closely by those who would like to protect human rights. And also by those who would like to make money on genetics to see if they can create such a database in their county too.

Similar databases are already being discussed in Estonia and Newfoundland. In Iceland, Peter Hauksson and his group plan to challenge the constitutionality of the law that created the database. If that fails, Hauksson says, he will take the case the European court of human rights. For the World, I'm Rebecca Roberts.

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