Education And Debate

The Icelandic database—do modern times need modern sagas?

BMJ 1999; 319 doi: http://dx.doi.org/10.1136/bmj.319.7207.441 (Published 14 August 1999) Cite this as: BMJ 1999;319:441
  1. Ruth Chadwick, professor of moral philosophy (r.chadwick@lancaster.ac.uk)
  1. Centre for Professional Ethics, University of Central Lancashire, Preston PR1 2HE
  • Accepted 28 May 1999

On 17 December 1998, as a result of legislation instigated by deCODE genetics, a Delaware biotechnology company working in Reykjavik, the Icelandic parliament adopted a law making it legal for a private company to construct an electronic database of the country's health records.1 deCODE has received an exclusive licence to build a database of Iceland's medical records (including diagnoses and test results, treatments and side effects) and will be able to combine and analyse these with genetic and genealogical data. The act also grants deCODE exclusive rights to commercial exploitation of the database for 12 years. Accordingly, deCODE has entered into a (non-exclusive) arrangement with Hoffmann-La Roche which gives the latter company access to the database for the purpose of researching the genetic origins of 12 common diseases.

Summary points

The government of Iceland has granted an exclusive licence to deCODE genetics to construct a database of the country's health records

Debate about issues of informed consent, privacy, scientific freedom, benefit, and commercial monopoly is vigorous

The question at issue is whether the rules being applied to the database can deal with the issues raised

A debate that focuses on traditional principles risks ignoring new challenges brought about by advances in medical technology

If the role of commercialism is to be assessed and defined appropriately, benefits to the individual and to public health need to be articulated clearly

Are the rules out of date?

The debate before and after the bill on Iceland's proposed database has been vigorous. Sigurdur Gudmundsson, Iceland's surgeon general, was quoted in the New Yorker as saying, “I don't think this country can just sit here and say, ‘Nope, sorry, we are going to stand on rules that existed in a different era for a different world.’”2 But are the rules being applied to the database able to address adequately the issues …

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