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Private company wins rights to Icelandic gene database

BMJ 1999; 318 doi: https://doi.org/10.1136/bmj.318.7175.11 (Published 02 January 1999) Cite this as: BMJ 1999;318:11
  1. Abi Berger, science correspondent

    The Icelandic parliament has passed a bill that has critical implications for countries around the world. The bill, passed on December 17, makes it legal for a private company to obtain a comprehensive electronic database containing health information about the entire population of Iceland.

    The bill will also allow deCODE Genetics, a privately funded company based in Reykjavik, to manage the database, enabling the company to add both genetic and genealogical information to medical details that will be taken from hospital records. The final vote was taken after months of political wrangling, and only one member of the 41 strong coalition government voted against it.

    deCODE Genetics, which is largely funded by American investors, has already signed a deal with the Swiss pharmaceutical company Hoffman-La Roche, giving them exclusive access to the database in order to establish the genetic origins of 12 diseases. Much of the growing opposition to the bill stems from the monopoly it clearly gives to a single company so that no other biotechnology or pharmaceutical company will have access to the data.

    A significant …

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