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
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 StefÃ¤nsson. 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: http://simnet.is/mannvernd/english.
Various articles in Nature Biotechnology: http://biotech.nature.com