In my mind Iceland's late "modernisation" plays a key role in the issue at hand, i.e. the debate surrounding deCODE genetics and the Medical Database. Without simplifying things too much it can be argued that contemporary Iceland only has a 60-year history. Before the Second World War Iceland was a very poor country, which though had a relatively good educational and public health level. It gained sovereignty from Denmark in 1918 and independence in 1944. With the advent of the 2nd World War things changed dramatically in Iceland. In 1940 the British army occupied Iceland but the British realised soon that they could not afford to keep their occupation force in Iceland so the Americans were asked, several months before they became official participants in the war, to take over, which they did. The Americans brought a force of tens of thousands of individuals, which needed lots of help from Icelanders. This meant that unemployment was eradicated in Iceland almost over night, which in conjunction with rocketing prices of Iceland's main export, cod, meant that Iceland had a booming economy during the war. The end of the war was also beneficial for Iceland since it got, relatively, the biggest share of the Marshall Assistance without having suffered seriously during the War. As a result the Americans helped to create lots of the infrastructure in Iceland. From then on the living standard in Iceland has risen steadily, until now it is one of the most prosperous nations on earth with a population of 283,000.

In the decades following the war the Icelandic economy was very centralised, being basically controlled by the politicians, which did not change until in the early 1980s. Then the Icelandic economy was opened up, a change that peaked in the early 1990s with the establishment of the Icelandic stock market, which became a possibility because Icelanders managed to control the inflation that had plagued its economy for decades, and Iceland joining the European Economic Area (EEA) along with members of the European Free Trade Association (EFTA). Today the Icelandic economy is a typical northern European capitalistic market with a strong social emphasis, which is though declining in Iceland.

Since the end of the war until the early 1990s Iceland had been socially a homogenous society, where the economic and social gap between the rich and "poor" was much narrower than in any European country. This changed in the early 1990s when Iceland saw a group of people that became extremely rich through investments on the stock market. Along the way the living standard of the whole population has also risen, creating a society that craves for new things, i.e. new technology. As an example Iceland is leading the world in number of mobile phones and Internet connections, per capita. Iceland has become a society that blindly believes in science and technology as its saviour, as can e.g. be seen in Icelanders' technocratic view towards health at the expense of alternative medicine. In this context it is interesting to note that Iceland has a very limited tradition of academic or civil uprising against the "evils of capitalism" or any other fundamental issues. Icelanders are by their nature very closed and willing to comply to authority if that does not hinder their overall material benefit. A case in point is the fact that in spite of all the controversy surrounding deCODE and the medical database a poll conducted in March 2000 revealed that more than 80% of the population was in favour of the database act from 1998 and trusted deCODE to run the database. This can partially be explained by looking at the above-mentioned facts, but there is a deeper and more problematic explanation for this fact.

Biotechnology, which only has a three-decade history, has dramatically increased our understanding of the interior of the cell and we finance these researches in the hope for a better life. But on what do we base this hope? Since the vast majority cannot base it on an understanding this hope is based almost totally on trust. The general public, including the politicians, can neither understand nor contest what the scientists tell them; we can only hope that they do not exaggerate. It is here that scientists acquire their power, for as has long been known knowledge entails power.

This trust is based on a weaker foundation that we tend to believe. When scientists say they have found the solution for this or that the media usually accepts it uncritically and celebrates the scientists. Who does not recall having heard the following: Scientists at university/institute X think they have found the solution to Y. The problem with this narrative is that the media usually have no means to follow this alleged discovery. It is also a fact that sometimes the solution to Y has no foundation. Everyone who pursues science knows this, but the media is not interested in publishing stories on scientists who have failed.^[1] Due to this the media further by default the myth of scientists being infallible and they usually repeat after scientists that science is an objective endeavour and that knowledge is acquired for knowledge's sake. This naïve discussion nurtures the mythic image of science. Scientists become mythic beings who are "saving our lives". Pall Skulason, a professor of philosophy and currently the rector of the University of Iceland, has pointed out that elevation of science at the expense "of other isms [has] furthered an irrational belief in the sciences ..." and that such scientism is " dangerous for the advancement of the sciences". Biomedical science, in conjunction with the media, is becoming a new power in our society or even a new religious institute, offerning the irresistable mantra of health and financial gain. Certain scientists and doctors seem to have unlimited access to the media. If they have something to say it is immediately a front-page story. This oversimplified picture of science in modern society is exactly what happened in Iceland with the establishment of deCODE Genetics in 1996.

In February 1998 deCODE Genetics, entered "into a research collaboration and cross-license agreement with Swiss-based pharmaceuticals firm F.Hoffmann-La Roche (commonly known as Roche) for research into the genetic causes of twelve diseases". The agreement was signed by Kari Stefansson, the CEO of deCODE, and a representative from Roche and, interestingly, sitting between them like a puppet was the Prime minister of Iceland David Oddsson. This fact has since become a potent symbol of the close relationship between deCODE and the Icelandic government where Kari Stefansson has been the puppet master, for as we will see the Icelandic government has given deCODE everything the company needed.[2]

The outcome includes two laws, the 1998 database and 2000 biobank acts, where informed consent is thrown out for assumed consent. The Icelandic government did all this to promote the company in spite of the fact that the Icelandic constitution explicitly forbids laws that promote special interests. Due to this fact deCODE has tried to distance itself from the government with statements like the following from a recent issue of The New England Journal of Medicine (Dec. 7, 2000). There, Kari Stefansson and Jeff Gulcher state that they had nothing to do with the biobank "bill, and the law on biobank has nothing to do with the Icelandic Healthcare Database". This claim is ludicrous for two main reasons. Firstly because I have a first hand knowledge of what seems to be deCODE's active participantion in writing the 1998 medical record database bill. In early December 1998 I attended a meeting with Kari Stefansson, the CEO of deCODE, but before I had the opportunity to talk to him I had to wait for about 20 minutes in his office while he was talking on the phone. Being unable to ignore his conversation it gradually dawned on me that mister Stefansson was talking about what sounded like the company's latest changes to the database bill. I do not know who he was talking to. This took place about three weeks before the bill became an act. Secondly deCODE has never hidden its aim of combining the information it will gain with the medical database with information from its genealogical database and a future bio-database (deCODE already has thousands of biosamples from Icelanders) to sell to insurance and pharmaceutical companies. The Icelandic government would never have proposed a biobank bill if not for deCODE.

Here it is important to note that in early 1999 deCODE was very conscious of the fact that it was still basically a US funded company; funded in 1996 by US venture capital. So in addition to secure more funds, DeCODE wanted to change this image for they knew that it would be easier for Icelanders to accept the company's access to the medical records if it had an Icelandic majority. In order to change this deCODE made their stocks available, first by making them available to selected investors and then on the so-called grey market in Iceland; an avenue for non-registered companies in Iceland to sell their stocks. The nature of the grey market is such that a company can offer its stocks without revealing any of its business plans, contrary to companies that are registered on the stock market. This means that a company on the grey market can manipulate its future shareholders, as they want. After dealings in the grey market in the spring and summer of 1999 deCODE managed to persuade Icelandic investors, financial institutes and individuals, to invest in the company, which resulted in the fact that the majority of deCODE shares were in the summer of 1999 owned by Icelandic investors. In this context it is interesting to note what seems to be the puppet-like contribution of the Icelandic government to this transition. To make this shareholders reversal more easy the Icelandic government liquidated the independently appointed medical ethics and data protection committees, who opposed the database act, and reinstated these committees, through ministerial appointments, with individuals who were favourable to the medical record database.

The question one has to raise in this context is how did the Icelandic media cope with this situation? They did not! Through my contacts in Morgunbladid, Iceland's only serious daily, I learned that it had an editorial policy aimed at promoting deCODE (it should though be noted that individuals can send in articles to the paper and have them published even though they contradict its policies). Iceland's state TV did not fare any better since most likely through influence from its boss, the minister of education, the government line was pressed, the same being the case with the only independent Icelandic TV station. So because of lack of any serious critical dialogue in the media or on governmental level the company's scientists could say anything they wanted to boost the sales of its stocks on the Icelandic grey market.

In March 2000 deCODE applied for a registration at the NASDAQ stock-market in New York, which was accepted in July the same year (before the IPO H-R own 13% of deCODE's share but after the IPO 10%). In their 800 page prospectus for its registration the company described in detail their plans, including how easily they managed to make the Icelandic population its commodity in the upcoming medical record database. But what is interesting about its prospectus is the fact that most of it revolves around describing all the uncertainties around this company. This report is in a stark opposition to the information that the Icelandic public, including the investors, was given about the company. They were told that the company would, unproblematically, save the world and Icelanders were so enthusiastic in buying deCODE stock that each share rose to 65 dollars on the grey market in April 2000. After the NASDAQ registration deCODE shares have gone down from the initial 18 dollars (notice the discrepancy between the price Icelanders payed for deCODE stocks in april 2000 and the initial NASDAQ price) to about 10 dollars per share. In a conference Mannvernd (Association of Icelanders for Ethics in Science and Medicine) held in March 2000 I approached two deCODE employees and asked them why DECODE showed Icelanders only some of their cards while foreign investors got to see them all. Separately these two individuals volunteered to me that the company did not lie to Icelanders but consciously only told part of the truth. The question remains then why did Icelanders allow the company to trick them? The faults lies with a government that from day one did everything in its power to promote the company and with incompetent media who uncritically "advertised" the merit of deCODE. To make things even worse Icelandic stockbrokers failed most of the time to make Icelandic investors aware that "rule" 144 would apply to the deCODE stocks after the company would bee registered on NASDAQ. This rule, which has been active in the US since 1931, puts a restriction on the sale of shares, for up to two years, that are bought in companies before they are formally registered on US stock market. Ironically this rule was enforced in the US to protect the general public from shaky deals like the one deCODE conducted in Iceland.

The result is a mockery of the democratic process in Iceland. With its money and power deCODE has managed to persuade Icelandic investors and politicians, who neither understand nor can contest what the deCODE scientists are telling them, to fulfil all their wishes, in spite of a fierce opposition from majority of doctors and academic scientists in Iceland. The media in Iceland is also to blame for their uncritical and purblind discussions of the issues surrounding deCODE. In order to appease the opposition the government will allow everyone who does not want to participate in the medical database or want their biosamples to be stored in banks to opt out (around 20.000 individuals have opted out of the medical database). Those who do not make the effort to opt out are assumed to be willing participants in any experiment that deCODE will ever do. The opt out list is kept by the Office of the Director of Public Health for Iceland, which is very interesting since while the medical record database has not yet been created the government keeps a smaller database of social deviants. The opt-out option has been hailed by the government as a sign of their willingness to compromise, but in my mind the opt out list creates a new problem. According to a EU directive from 1995 dealing with data processing, which Iceland has had to adopt as a member of the EEA, governments are not allowed to hold information that deal with individuals' personal beliefs, whether they are of political, philosophical, theological or other origin, unless national interests requires it. The opt out lists fall definitely under this category; but the question remains whether it was in Iceland's national interest to promote deCODE.

France is a very good venue for me to state my case since our modern ideas about civil rights were born here with the storming of the Bastille in 1789, which has since been a major influence on western culture, including the biological sciences. But what was aquired with the French revolution, idealized equality for all, is now in danger of being lost. Repeated research has shown that the European social welfare systems are not everlasting. Due to various social, demographic and economic factors these systems are bound to undergo drastic changes in the coming decades. European citizens will increasingly have to rely of private health insurance and it is here that the Biotech industry can have a lasting influence of the social organization in Europe if not properly controlled. If insurance companies will be allowed to use genetic testing to screen future policy holders, as is now being experimented on in the UK, we face the danger of going back to the old feudal social system by creating genetic lower class, genetic middle class and genetic aristocracy constiting of those with all the "right" genes. This has to be prevented, at any cost!

HEIM
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