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Icelandic woman wins genetic privacy case

13 April 2004
By BioNews
Appeared in BioNews 253

The law used to create Iceland's national genetic database may be unconstitutional, according to a recent ruling by the country's Supreme court. In a case brought last November, the court upheld the right of a woman to withhold her deceased father's medical records from the scheme, which is run on an 'opt-out' basis. Mannvernd, the pressure group opposed to the database, has now released a detailed English translation of the ruling, New Scientist magazine reports. The decision could have implications for similar medical database projects taking place in other countries.

In 2000, the Icelandic government granted the biotech firm deCODE Genetics exclusive access to the medical records, family trees and genetic information of all of the country's 270,000 inhabitants. This 'Health Sector Database' has caused controversy, because it is based on presumed patient consent - unless a person actively opts out of the database, then they are considered to have consented to take part. Concerned academics and doctors set up an organisation called Mannvernd, the Association of Icelanders for Ethics in Science, which describes itself as 'the organised opposition to the Icelandic government's Act on a Health Sector Database (HSD)'. It says that the supreme court's recent decision is 'a watershed' in the ongoing debate over the database, and claims that it shows that 'the courts will set clear limits as to how far commercial population genomics and biotechnology can intrude into the private lives of citizens'.

The court's verdict was based on paragraph 1, article 71 of the Icelandic Constitution, which states that: 'Everyone shall enjoy the privacy of his or her life, home and family'. Ragnhildur Gudmundsdottir did not want the medical records of her dead father to be included in the database, claiming that some of the data could be used to infer information about her own health. The court agreed to her request, stating that the HSD Act 'neither precludes or provides for' a demand that the records of a dead parent should not be transferred into the database.

There has been little immigration to Iceland since the arrival of the Vikings almost 1000 years ago, and combined with the country's extensive genealogical records, deCODE has been using this unique genetic heritage to track down genes involved in disease. Chief executive Kari Stefansson told New Scientist that the project would be changed, but not abandoned. He also warned that if other countries took a similar approach, 'it would be substantially more difficult to do epidemiological studies and to establish why treatments failed'. The UK's medical database, BioBank, is starting collect DNA samples and medical information from half a million middle-aged Britons, who will be recruited as volunteers.

Gene privacy for Icelanders
New Scientist |  10 January 2004
The Icelandic Health Sector Database Act stricken down as unconstitutional
Mannvernd |  1 April 2004
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17 February 2003 - by BioNews 
Icelanders may not have the unique genetic heritage that gene-hunting firm deCODE Genetics had previously claimed, a new study suggests. The Icelandic biotech company is hunting for genes involved in common illnesses, using medical records and DNA samples from its country's people. It claims that Icelanders are more genetically similar...
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deCODE genetics, the controversial Icelandic genetics research firm headed by Kari Stefansson, is to be floated on the stock market. It is likely to become one of the largest biotech firms in Europe. 'deCODE is going to go like a bomb. It would not surprise me to see its value...
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