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Iceland's database is ethically questionable

BMJ 1999; 318 doi: http://dx.doi.org/10.1136/bmj.318.7197.1565 (Published 05 June 1999) Cite this as: BMJ 1999;318:1565
  1. Bogi Andersen, assistant professor of medicine.,
  2. Einar Arnason, professor of evolutionary biology and population genetics.
  1. University of California, San Diego
  2. University of Iceland

    Last December the Icelandic parliament, Althingi, passed an act on a health sector database. The legislation was instigated by a Delaware corporation, deCODE, a biotechnology company operating in Iceland (2 January, 11).

    The company will receive an exclusive licence to construct a database containing the entire country's health records and permission to combine and analyse them with genetic and genealogical data.

    “Some issues … should be left out of politicians' hands”

    The Icelandic government and deCODE maintain that the project will uphold patients' rights and conform to international obligations and will serve as a model for similar databases elsewhere (20March, p 806).

    Few geneticists dispute the usefulness of databases. Rather, the debate focuses on how deCODE, through the act, has been permitted to break fundamental principles of scientific conduct: the requirement that research plans should be evaluated and approved by independent ethics committees before recruiting patients for studies. Without submitting a …

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