Brussels, 17 April 2002
The Icelandic government announced last week its plan to introduce legislation allowing it to provide financial guarantees as part of a general initiative to encourage continued expansion of Iceland's biotech sector.
The bill, if approved, would authorise the Minister of Finance to guarantee a convertible bond offering by deCODE - a company spearheading Iceland's genomic revolution - of up to €2 million. With new investment, deCODE says it hopes to accelerate the development of new drugs based on its discoveries in the genetics of dozens of common diseases such as arthritis.
First, the bill must be passed by parliament in Iceland and approved by the European Free Trade Area (EFTA) Supervisory Authority. This may not be as easy as it sounds. Iceland's parliament passed a law in 1998 allowing a national health database to be created - by its contractor, deCODE - but limited to health records and family histories. Opposition to the bill grew when the decision was made to add 'genetic information' to the database.
Data protection Vs. medical breakthroughs
Dr. Kari Stefansson, CEO of deCODE, explained last week what his firm plans to do if it raises the money.
"We aim to complement the medicinal chemistry and proteomics capabilities with new infrastructure and personnel in functional genomics, animal studies and compound screening," he said. "This will allow us to take a growing number of disease projects from gene discovery all the way to compounds in the clinic…and build intellectual capital here in Iceland."
But critics of deCODE's activities say it is like putting Iceland's 1200 year genetic history on sale for the highest bidder, that Icelanders can not 'opt out' of the database and deCODE's special relationship with the government gives it a monopoly situation. This raises fundamental questions.
Who has the right to access and use personal genetic information, and does it infringe on data privacy? Will drugs developed using a whole population's genes be freely available to that population - the issue over copyrights and patents?
The European Commission answered a letter put by Mannvernd, an Icelandic group concerned about Iceland's treatment of medical records and personal data, saying this was an 'important issue' and the Commission intends to ask the EFTA Supervisory Authority to look for any possible compliance breaches of the Directive on data protection in the Treaty on the European Economic Area.