91av

Iceland is Valhalla for geneticists. Virtually all the country’s 270 000 inhabitants are descended from settlers who colonised the island in the ninth century AD. Its genealogical records stretch back a thousand years and its medical records for a hundred, so the country is uniquely placed for tracing inherited diseases.

For trying to exploit this resource, Kari Stefansson has gained a reputation as a bad boy of genetics. After twenty years working as a neuroscientist in the US, he set up deCODE Genetics and persuaded the Icelandic government to sell the company exclusive access to the nation’s health records. The company goes public next week. Stefansson has visions of Iceland as an international centre for biotech research. But critics accuse him of making money from disease, trampling on people’s privacy and wrecking the relationship between doctors and patients. Ehsan Masood speaks to the man at the centre of a modern-day saga.

What’s your vision? Why did you decide to buy access to Iceland’s medical database?

Used with Iceland’s unique genealogy database, it will revolutionise our understanding of complex diseases. Right now, complex diseases are diagnosed on what are known as consensus criteria. According to these, if you have symptoms a, b and c you might be diagnosed as having rheumatoid arthritis. Or if you have symptoms 1, 2 or 3 you could have lupus. But this is a dangerous way of doing things.

I’ll give you an example. Von Recklinghausen’s disease is characterised by lesions in many organs. There’s thought to be a relatively simple connection between genetic mutations and changes in physical characteristics-the phenotype. But this is not so. In families with this disease, you find people whose phenotypes vary from a few isolated freckles to someone who might look like Elephant Man. Yet they all carry the same mutation in the same gene. Imagine if you wanted to search for this gene and decided to narrow it down to the group of sufferers who had freckles. You’d never be able to find it. Too many people have freckles.

So how will you do things differently?

What we do is define a disease very broadly, but very rigorously. We use health-care institutions to search for people who suffer from this disease. Out comes a list of encrypted names. We’ll run these names through the genealogy database and find out which families have suffered from the disease. We can then simply see what it is in the phenotype that has passed through the generations.

You don’t like people referring to the health-care database as a gene database. Yet part of your strategy depends on asking for people’s DNA profiles and matching them with the genealogy and health-care records. Doesn’t that make it a gene database?

It doesn’t.

But the genetic component is important.

What makes us such a powerful operation in human genetics is not human genetics, but genealogy. The health-care database will not be used to isolate genes specifically. We only do gene isolation for specific diseases where we have access to the patient. Once we have identified a family with one of these diseases, what we will do is go to those people and ask them to give us blood so that we can isolate DNA. From this we will be able to map genes to diseases that no one else has been able to touch. When we do this, we will ask for their permission to cross-reference their names with the help of the health-care database. But in order to do this, we will have to get their explicit, signed consent.

Does this mean that you can identify individuals from the database?

No. The information in the database will be encrypted and the keys will be kept by the Data Protection Commission of Iceland.

But won’t you need to know the identity of individuals when you’re matching families from the health-care database to names on the genealogy records?

It will be impossible to extract data on fewer than 10 people. The database won’t let you do it. We have strict administration methods with strict locks, et cetera. On top of that, we have a legal instrument-an act of parliament-in which the punishment for identifying individuals within the database is two years in prison.

Yet leading experts in computer security have said-

We have never claimed that the protection of privacy cannot be broken. The principal element here is trust. This is crucial because it would be silly for people to say you can’t put together a database like this unless it can never be violated. It’s like saying you can’t build or drive cars because they are the cause of deaths on the road. It’s not going to be impossible to violate the database. But it’s going to be a lot harder than in any other place where people are doing research involving humans. And unlike any other place, it will be a criminal offence.

Your plans have attracted considerable criticism, both in Iceland and abroad. There are 18 000 people who’ve opted for their records to be excluded from the database. Many doctors are refusing to hand over patient information. Does that worry you?

The fact is that 90 per cent of Icelanders are in favour of the database.

What evidence do you have for this? We only hear from groups like Mannvernd, the body opposing the database.

This “moral majority” has expressed itself time and again in newspapers and elsewhere. The thing is that your profession, however noble it may be, earns its living by fuelling controversy and not necessarily by publicising the truth. Mannvernd has absolutely no influence in Icelandic society. It is a completely inconsequential organisation and they do not represent 10 per cent of Icelandic society. Mannvernd claims that I bribed the Prime Minister of Iceland through some shady real-estate deals, that I bribed the political parties of Iceland, that I fooled the Icelandic nation, you know, things of that sort. How dare they?

Will you sue?

No.

Why not? They’re big allegations.

Yes, they are big allegations but I think that it is much better to leave them to their own destruction. I don’t think I need to participate in that. I am a firm believer in freedom of expression and I think that people should be allowed to express even ridiculous, thoroughly silly views.

What about doctors’ groups? Are they also wrong to oppose you?

It’s interesting that a lot of those who complain about the commercial aspects of this are physicians. They say: “How can you sell access to a database on health-care information?” But who are physicians? They are the profession that sells services to the sick and the wounded and dying.

But physicians aren’t in business.

It doesn’t matter. What I’m saying is that health care is a service that is bought and sold. Remember that we are so primitive a species that we have difficulty distributing anything among ourselves without using the market as an intermediary. Even if this is food to starving people-which I think is incredibly sad. This is why it’s a lousy hypothesis to say that large corporations selling access to a health-care database are committing an act of ugly capitalism.

What do you think motivates your critics?

There are those who believe that our company, the biotechnology industry in general and a health-care database like this would all be one colossal act of ugly capitalism. These people are still fond of the macroeconomic ideas of the 1960s, who feel that the government should do things like this and health care and information should not be used to generate monetary value.

Isn’t that a legitimate worry? What will happen if your company goes bust? Or if your annual turnover exceeds Iceland’s GDP?

That is a worry for everyone. It doesn’t matter if it’s in Iceland or elsewhere. But we aren’t anywhere close to being of that magnitude. What you’re basically expressing here are generic concerns about economic structure. I’m not necessarily in disagreement with any of them. My father was a member of parliament for Iceland’s socialist party and I grew up with my own concerns of this sort. I understand them and respect them.

Your critics would say you don’t seem to believe in these concerns any more.

I don’t know that. I think that the past couple of decades have taught us that the state is not particularly good at running industries. I am not, however, entirely sure that I’m pleased with the way we distribute wealth in our society. We have enormous obligations when it comes to our fellow human beings and I think that the cold-hearted sort of capitalism, which creates a lot of value and retains it in the hands of very few, is unacceptable. I think that we have to find a way of distributing wealth in our society-I think it is quintessential. How we should do that, I’m not absolutely sure.

Will any scientist be able to use the database?

No, not every scientist will be able to use it free of charge. This is a commercial instrument. We have to invest enormous amounts of money to put together this database. The more people use it, the better it is for us. But there will be lower fees for academic institutions and higher fees for big pharma companies and large health-care organisations. And we will make sure that there is substantial access for individual scientists who do not have funds to pay for it. That’s not because we are left over from the sixties-which we are-but simply because it’s good business. We depend on the goodwill of society and we have to conduct ourselves in a manner society can live with it. Society will not accept us otherwise.

That allegation of bribing the Prime Minister: I take it that you didn’t?

That is all lies and innuendo. There were four parliamentary parties in Iceland: two in government and two in opposition. We sat down before the parliamentary election of 1999 and discussed whether we should put any money into their political campaigns. Our parliamentary democracy is based on election campaigns and they cost money. We decided that it was our duty to contribute to every political party that requested funds-as long as this didn’t go over a certain maximum amount.

Since political parties in Iceland don’t have to reveal who gives them money, can you see how political donations can be thought to influence the political process?

Now listen. The party farthest to the left, the Greens, came to us and asked for some money and we gave them exactly what they asked for. Every single member of the Greens voted against the database bill. The other opposition party, which was also against the bill, came to us and asked for some money. Again, they received what they had asked for. The smaller of the government parties came to us, asked us for money; we gave it to them.

The largest party, the Prime Minister’s conservative party, did not ask us for any money and we didn’t give them any. So I cannot see where the criticism that we have bribed the Prime Minister comes from. It’s just ridiculous. We never donated a single dime to the Prime Minister’s party. I even phoned the director of the conservative party, told him that the other three had asked for money and asked if they wanted us to do it and they said, “No, your money would be too expensive.” And I think their assessment was correct.

Do you have any regrets?

No. I was bruised a little bit by some aspects of this debate, but not seriously. That’s a part of the process.

You mentioned that your father was a socialist MP. What would he make of all this?

My father was a social romantic who had a keen sense of history. I’m convinced that he would look at what we are doing as an attempt to seek poetic justice for the hardships our nation has suffered for the past thousand years. This is because some of the qualities that make the Icelandic nation an ideal subject for genetics research are rooted in the consequences of natural catastrophes. These include the famines, volcanic eruptions and plagues we suffered. They caused the population bottlenecks.