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Captivating Kari

By Mark D. Uehling

Sept 15, 2005 | At deCODE Genetics headquarters, founder Kari Stefansson can occasionally be seen shuffling about with tousled hair. He is deep in thought, wearing what appear to be slippers. Stefansson enjoys regular visits to a local gym and - in contrast to pear-shaped senior managers in many industries - keeps his stomach flat. But make no mistake: The French ambassador may suddenly drop by to chat. Reykjavik TV stations may urgently demand his appearance. And on such occasions, Stefansson slips into something presentable and rises to the role of an ex-Harvard professor and scientist-entrepreneur. Bio-IT World's Mark D. Uehling spoke with Stefansson at the company's offices.

Q: How many different diseases is deCODE working on?

 Kari Stefansson

A: We are working on the genetics of 50 common diseases. The reason we are working on so many is that it is difficult to work on one of them without working on the others. You are working on the same data over and over again. In one disease, you are a patient. In another you are a control. There is a domino effect.

That sounds pretty expensive...

We have three programs in clinical trials. We have sufficient cash to bring these drugs to market. We have prepared for doing it ourselves. We want to take it as far to market as possible. There is a structural flaw in the biotech industry. It is chronically underfunded, which means it has a tendency to form too-early alliances with pharma.

Is it risky to publish so much of what you discover?

We publish what we do because it provides us free due diligence on the science. We take a little risk when we come to exposing trade secrets, but what we get in return is very much more. The risk/reward ratio is favorable. Many genomics companies were founded when we did. None of them published anything. We are the only ones left. Our claims that we have discovered genes have been validated by the peer-review process. There is no conflict between the business interest and the science.

Have you had to lower your expectations for genomics?

I don't know what "genomics" means. I don't know what "proteomics" means. People often use that as a euphemism for nucleic acid chemistry. In the beginning, they believed the way to isolate a gene was line up a lot of [Applied Biosystems] sequencers. At the end of the line, there would be some miraculous act of God and a gene would come out. The scarce resource - the resource without which you cannot work - is people, patients in whom you can study the disease. We seem to have been the first ones to understand that what you needed was access to a good population. That was the reason we could do the genetics in a successful manner.

Your proposal for a national, centralized database seems to have died.

Your collection of data is influenced by your preconceived notions of what you are going to get out. I wanted to develop an instrument that would get rid of all that bias. We have genotyped 60 percent of the adult population of Iceland. We are not in a position to do all that I wanted to with a centralized database. But most of it, we can do with our current data set.

In the U.S., one national medical database would not be politically acceptable.

If presented appropriately, 90 percent of the people in the U.S. would agree on doing things like this. If you would regulate the insurance industry to the extent where people would not lose their jobs or their insurance, Americans would want this. I am not impressed that the Icelanders are more eager to participate than Americans. Why shouldn't you want to find ways of dealing with diseases?

There are concerns about privacy...

I don't buy into that notion. You have to be somewhat twisted. My estimation is that somewhere between 6 and 10 percent of population are sufficiently twisted to not participate in biomedical research. Selfish doesn't capture the half of it. It is ugly and predatory behavior that does not capture the essence of Christianity that society is based on.

Do you think drug safety concerns after Vioxx will reshape the industry?

The Vioxx story is not going to have long-lasting effects. We as a society deny you the capability to take the risk that is similar to driving a vehicle. This is a philosophically flawed view. We should recognize the risk and manage the risk. We should not strive for risk-free drugs. That is something you are never going to find. People should be allowed to make choices on the nature of the risk and the benefit.

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