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Iceland OKs Controversial Health Databank

21 December 1998 6:30 pm
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A private company has received permission from Iceland to build a database containing the health records of the entire nation. But critics of the controversial legislation, which Iceland's parliament passed on 16 December, have pledged to find ways to block its implementation.

The new law grants one company, deCODE Genetics from Reykjavik, the right to establish and commercially exploit a nationwide database, into which hospitals and health care stations will have to enter their patients' medical records. The company, founded and led by Kari Stefansson, a former Harvard University geneticist, hopes that information from the country's homogeneous gene pool will aid its search for disease-causing genes, on which diagnostic tests and therapies could be based.

Government officials generally see genetics as a promising way to generate new jobs and income for the country's small, fishing-based economy. But critics say it violates basic ethical principles by not asking patients for their consent. "We look at this as a black day in the medical and scientific community," says psychiatrist Tomas Zoega, chair of the Ethics Committee of the Icelandic Medical Association.

Despite their defeat, deCODE's critics say that they will fight on. One recourse, says Zoega, is to ask the European Court to overturn the law as a violation of an individual's right to privacy. In addition, the bill allows individuals to notify the surgeon-general if they oppose use of their data, and the medical association may place ads and provide patients with the necessary forms, he adds. "We will certainly be dragging our feet" about participating in the data collection, Zoega says.

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