ICELAND鈥橲 grand plans for a national genetic database have hit the rocks, after the country鈥檚 supreme court ruled that the law used to create it is unconstitutional.
In November, the court upheld the right of Ragnhildur Gudmundsd贸ttir to withhold her deceased father鈥檚 medical records from the database. A detailed English translation of that ruling was made public on 1 April.
The court decided that the law, designed to set up a gene database of the entire Icelandic population to aid discovery of genes linked with disease, breached the plaintiff鈥檚 right to privacy. Gudmundsd贸ttir鈥檚 father had not given consent for his details to be included, and his genetic records could be used to infer medical information about the daughter, the court agreed. The verdict 鈥渟hows that the courts will set clear limits on how far commercial population genomics and biotechnology can intrude into the lives of citizens鈥�, says Mannvernd, the lobby group opposed to the database, which released the translation.
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DeCode Genetics, the company given an exclusive licence by the Icelandic government to run the database, says the project will be changed, but not abandoned. But Kari Stefansson, DeCode鈥檚 CEO, warned of the consequences if other countries took a similar line. 鈥淚t would be substantially more difficult to do epidemiological studies and to establish why treatments failed,鈥� Stefansson said.