[Med-privacy] Icelandic DNA Project--again

[pmarshall]

Icelandic DNA project hit by privacy stormRobin McKie, science editor
Sunday May 16, 2004

The Observer

It was meant to give Iceland a global lead in medical research and=20
create one of the world's most powerful drug companies. But the launch=20
of DeCode Genetics is threatening to become a national embarrassment.

One leading US biologist has called for an international scientific=20
boycott of Iceland. Others say the company is profiteering. Now DeCode,=20
which was set up to carry out pioneering work into genes and DNA, has=20
been warned its actions may infringe the privacy rights of Icelanders. A =

unique experiment may be threatened, though DeCode angrily dismisses=20
such fears.

Scientists in Britain, Canada, Norway, and Estonia - where similar=20
projects have been set up - are watching with interest.

The furore contrasts with the fanfares at DeCode's launch, by Kari=20
Stefansson, in 1999. Icelanders' genes remain unchanged from Viking=20
days, he realised. In addition, islanders' habits of keeping careful=20
family and health records, along with the development of modern DNA=20
techniques, gave science a golden chance to unravel the roots of major=20
ailments by charting the progress of a cancer or heart disease through a =

family and isolating DNA markers from relatives. Major strides, and a=20
great deal of money, could be made in developing treatments, he reckoned.=


Instead of US companies exploiting the island's Viking heritage, as has=20
been done in other isolated communities, Iceland would go it alone. So,=20
in a remarkable deal with the Icelandic government, DeCode was promised=20
access to the nation's health records and assured the co-operation of=20
its 270,000 population. Killjoys could simply opt out.

At first all went well. Then DeCode's share price plunged, a common=20
problem in biotechnology. Stock that stood at $56 fell to $2, though it=20
has risen back to $8. Many Icelanders have lost considerable sums.

But it was DeCode's deal with the Icelandic government that caused the=20
biggest row. 'The government gave a single company monopoly control of=20
the country's health records,' said Helen Wallace, of GeneWatch UK.=20
'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=20
DNA is being exploited. DeCode denies this and says its drugs will be=20
given free to Icelanders. 'We have pinpointed 15 genes involved in=20
common diseases and have drugs in clinical trials,' said DeCode's Edward =

Farmer.

Now DeCode faces a new setback. Ragnhildur Gudmundsdottir has blocked=20
the company from obtaining not just her health records but her dead=20
father's because data in them could infringe her privacy, as she shares=20
half his DNA. According to the scientific journal Nature, the ruling, by =

Iceland's supreme court, means 'the 1998 law governing the creation of=20
the database is unconstitutional because it fails to protect personal=20
privacy adequately'.

DeCode says the problem is a storm in a test tube. Others are not so=20
sure. Skuli Sigurdsson, of Iceland University, thinks the health record=20
database project may be scrapped. DeCode says it could go on without it=20
and adds 100,000 Icelanders have already offered family records and=20
blood samples. Nevertheless, the loss of health records would be a blow. =

'What happened in Iceland should be noted by other countries that are=20
considering setting up similar projects, and who should realise you have =

to involve the public, not compel them, when you ... sell off your=20
nation's genetic heritage,' added Wallace.

Guardian Unlimited =A9 Guardian Newspapers Limited 2004