Nordic Gene Study Requires Consent

A company has been ordered to stop estimating Icelanders’ genotypes and linking them to hospital records.

By | June 24, 2013

FLICKR, SHAURY NASHThe company deCODE Genetics is known for harnessing Iceland’s excellent genealogical records to aid in massive studies of genetics and disease. But according to an article in the Science print edition, Iceland’s Data Protection Authority (DPA) ruled last month (May 28) that the company must seek consent before continuing genetics studies using estimated data on 280,000 Icelanders—some living and some dead—who did not agree to be studied.

Already deCODE has published 6 papers in Nature and the New England Journal of Medicine using the data-collecting strategy, which involves estimating genotypes of relatives of 120,000 volunteers who did agree to let the company study their genetics. In some cases the company is able to link the estimated genetic data to hospital records of patients who volunteered to be part of another Icelandic research study, for which they did not consent to undergo genetic testing.

Kári Stefánsson, founder and CEO of deCODE, argues that the company, which is now owned by Amgen, is not violating patient privacy because it is not actually sequencing citizens’ DNA. “These are just conjectures about people, hypotheses,” he told Science.

The Icelandic government is giving the company until November to demonstrate they have obtained consent from their subjects.

(For a free online version of the article, see ScienceInsider.)

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