Robin McKie, science editor Sunday May 16, 2004 The Observer
It was meant to give Iceland a global lead in medical research and create one of the world's most powerful drug companies. But the launch of DeCode Genetics is threatening to become a national embarrassment.
One leading US biologist has called for an international scientific boycott of Iceland. Others say the company is profiteering. Now DeCode, which was set up to carry out pioneering work into genes and DNA, has been warned its actions may infringe the privacy rights of Icelanders. A unique experiment may be threatened, though DeCode angrily dismisses such fears.
Scientists in Britain, Canada, Norway, and Estonia - where similar projects have been set up - are watching with interest.
The furore contrasts with the fanfares at DeCode's launch, by Kari Stefansson, in 1999. Icelanders' genes remain unchanged from Viking days, he realised. In addition, islanders' habits of keeping careful family and health records, along with the development of modern DNA techniques, gave science a golden chance to unravel the roots of major ailments by charting the progress of a cancer or heart disease through a family and isolating DNA markers from relatives. Major strides, and a great deal of money, could be made in developing treatments, he reckoned.
Instead of US companies exploiting the island's Viking heritage, as has been done in other isolated communities, Iceland would go it alone. So, in a remarkable deal with the Icelandic government, DeCode was promised access to the nation's health records and assured the co-operation of its 270,000 population. Killjoys could simply opt out.
At first all went well. Then DeCode's share price plunged, a common problem in biotechnology. Stock that stood at $56 fell to $2, though it has risen back to $8. Many Icelanders have lost considerable sums.
But it was DeCode's deal with the Icelandic government that caused the biggest row. 'The government gave a single company monopoly control of the country's health records,' said Helen Wallace, of GeneWatch UK. 'Many doctors were upset, and that disquiet was passed on to patients.'
Since then 20,000 people have opted out of DeCode's plans, saying their DNA is being exploited. DeCode denies this and says its drugs will be given free to Icelanders. 'We have pinpointed 15 genes involved in common diseases and have drugs in clinical trials,' said DeCode's Edward Farmer.
Now DeCode faces a new setback. Ragnhildur Gudmundsdottir has blocked the company from obtaining not just her health records but her dead father's because data in them could infringe her privacy, as she shares half his DNA. According to the scientific journal Nature, the ruling, by Iceland's supreme court, means 'the 1998 law governing the creation of the database is unconstitutional because it fails to protect personal privacy adequately'.
DeCode says the problem is a storm in a test tube. Others are not so sure. Skuli Sigurdsson, of Iceland University, thinks the health record database project may be scrapped. DeCode says it could go on without it and adds 100,000 Icelanders have already offered family records and blood samples. Nevertheless, the loss of health records would be a blow. 'What happened in Iceland should be noted by other countries that are considering setting up similar projects, and who should realise you have to involve the public, not compel them, when you ... sell off your nation's genetic heritage,' added Wallace.