by GRAIN | 8 Mar 1999

March 1999


Descended from the Vikings, and having remained quite isolated since that time, Iceland's 270,000 population shares more common genetic traits than most human groups, who come from the fusion of different peoples. Now, under the pretext of facilitating medical research, the Icelandic Parliament has privatised its country's genetic heritage.

In December 1998, parliament passed a bill authorising the creation of a centralised database of non-personally-identifiable health data with the aim of improving health and health services. The database is to be set up, maintained and serviced by a licensee, which in exchange, will be granted a 12-year monopoly on its commercial explotation. Any other party wishing to use this database will only be able to do so if its research plans do not interfere with the commercial objectives of the licensee. Although the bill talks about a "licensee," there is only one candidate, the company that introduced and pushed the bill through: deCode Genetics.

Commercial interest in the database has both genetic and cultural origins. Like many indigenous peoples, over time Icelanders have accumulated high frequencies of what some scientists see as "fit" or "unfit" genes from their predecessors. These high frequencies make isolating and cloning specific genes, and developing wonder-proteins or new gene therapies from them, much easier. These more uniform genetic populations are favourite targets of the world's gene hunters. They have been insultingly described as "human isolates" by the world's largest human biprospecting programme, the Human Genome Diversity Project. In addition to their unusual genetic heritage, and unlike many other of the groups of "human isolates," Icelanders have systematically collected their health records since 1915, and they are very fond of tracing back their ancestors to the first settlers. These two cultural factors increase their interest to deCode Genetics.

A cunning fox in the form of deCode Genetics persuaded the nation's parliament to allow it to become the hens guard, having had the arrogance to sell its chickens before slaughtering them. It had already signed a US$ 200 million contract with the Swiss pharmaceutical giant Hoffmann la Roche for gene identification work involving Icelandic populations. Its commercial objectives are known to be very broad, comprising "almost any disease that might have a genetic component."

When the proposed bill was first made public, a sector of Iceland's research community - including the Icelandic Medical Association - reacted strongly against it. They created Mannvernd, an association devoted to preventing the project from going ahead. Mannvernd opposes the project on three main grounds. First, it threatens the personal privacy of Icelanders. Second, it permits research and commercial exploitation of personal information without the consent of the subjects, and without ethical or scientific controls over applications of the information. Third, Mannvernd denounces the bill for endangering freedom of scientific investigation and freedom to engage in commerce by taking out patents on discoveries involving Icelandic genes and genealogies.

Mannvernd's opposition resulted in some changes in the most onerous aspects of the text and spurring public debate. The association is now determined to keep the issue in the public arena and to convince the medical establishment not to contribute information to the database.

The bill's supporters used strong patriotic arguments to gain support for it. The database will have to be based in Iceland, and maintained by Icelanders, which represents a bounty of jobs in a country where fish make up 70% of exports. DeCode Genetics is also touted as an Icelandic company, founded by a Harvard-trained Icelander, Kari Stefänsson. However, as Richard Lewontin, the Harvard population geneticist who has publicly denounced the bill, points out, "DeCode is owned by a Delaware paper corporation, and its financial backers include Advent International, Atlas Venture, Arch Venture Partners, Falcon Technologies, Medical Science Partners and Polaris Venture Partners." And five out of seven directors of deCode are US citizens.

Lewontin points out that up to now the contribution of genomics - the deciphering of the genetic code - to human wellbeing approaches zero. And turning the Icelandic database into a source of profit for a single corporation negates any public service benefits it might offer. In fact, it turns the Icelandic population - and its medical records and its like for genealogy - into one of the country's main natural resources.

Sources: Mannvernd web page: Various articles in Nature Biotechnology:

Author: GRAIN
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