NCPA - National Center for Policy Analysis

Genetic Researchers Will Use Iceland's Privately Managed Medical Database

January 5, 1999

The Icelandic parliament passed a bill in December to allow a private company to obtain a comprehensive electronic database of health information about the entire population of Iceland, says the British Medical Journal. The database is extremely valuable to scientists, and biotechnology and pharmaceutical companies, because meticulous medical records have been kept on every Icelander since World War I and tissue samples taken and stored for much of the population since World War II. Icelanders' genetic isolation makes them ideal for establishing the genetic basis of disease.

  • The bill will allow deCODE Genetics, a privately funded Reykjavik company, to manage the database, enabling the company to add both genetic and genealogical information to medical and hospital records.
  • deCODE Genetics has already signed a deal giving the Swiss pharmaceutical company Hoffman-La Roche exclusive access to the database for research on the genetic origins of 12 diseases.
  • But the Icelandic Medical Association (IMA) and Mannvernd, the Association of Icelanders for Ethical Science, oppose the bill.

Although deCODE has promised to encrypt the data to protect individuals' privacy, opponents argue that since Iceland has only 270,000 people, it will be easy to establish which data belongs to which individual, compromising personal privacy.

Consent for data to be passed on has not been obtained from patients up to now. The bill allows those who object to opt out, but otherwise consent will be assumed. In addition, it will not be possible to withdraw data that has already been entered.

Opponents also object to the monopoly being given to one company to develop new drugs and to test candidate drugs on the Icelandic population. Other scientists will no longer have equal rights to data.

Source: Abi Berger, "Private Company Wins Rights to Icelandic Gene Database," British Medical Journal, January 2, 1999.

 

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