Iceland’s deCODE Genetics made headlines last week when a former employee of the company was found guilty of violating copyright laws. Read IR’s Eliza Reid’s interview with deCODE founder and CEO Kári Stefánsson about genealogy in Iceland and the future of deCODE.

Published in Iceland Review 44.02. Written by Eliza Reid, photos by Páll Stefánsson.

“Kári” is the Icelandic word for “wind.” Founder and head of deCODE Genetics, Kári Stefánsson lives up to his moniker, as famous for his gutsy science venture into Iceland’s gene pool as he is for his powerful personality. Since its inception in 1996, deCODE has never been far from the international headlines, whether for the initial controversy about putting together a database based on Icelanders’ healthcare information, or for their recent success in isolating genes linked to diseases and drug development.

Eliza Reid: One of the results of deCODE’S initial work was the Íslendingabók [a public, online collection of Icelandic genealogy, dating back several centuries]. What was your motivation for giving Icelanders access to this?

Kári Stefánsson: We opened it up to people because we have this genealogy and it is a spectacularly powerful instrument for us. Icelanders have been interested in genealogy for 1,100 years. This is what we have done during the dark winter nights.

ER: How do you determine deCODE’s research priorities in terms of which genes you are going to look at?

KS: The beauty about discovery is that when you start out, you cannot predict what is going to come out of it. ...You have to be prepared to respond to the unexpected.

ER: So it’s not dictated by, say, a predominance of something in the Icelandic population?

KS: The prevalence of diseases in Iceland is pretty much the same as in Canada and the US. The community here is so small that the only diseases that we can make discoveries in are diseases that are relatively common.

ER: Does the strategy of your pharmaceutical partners [who provide the funding for much of the research] have any impact on what you study?

KS: Of course the willingness of the companies to buy services from us has impact… our model is to sell services to help us to build up infrastructure that we then subsequently use on our own internal programs.

ER: Do you work at all with generic drug companies?

KS: The generic drug companies and companies like us have totally different interests. ...Generic drug companies are traditional industrial companies that are based on production and distribution, not on innovation, and often times they collide with companies like ours because of different views on the value of intellectual property. I think it isn’t that self-evident that we should allow generic drugs on the market earlier and I think it is even possible that we should increase the patent life of drugs to finance more innovation in healthcare. But these are difficult political questions.

ER: Do you agree with that statement in relation to diseases like AIDS?

KS: There are situations that arise in the world where the general rules should not apply. One example of that is AIDS in Africa. There is a crisis in Africa, and if western culture lets Africa die from AIDS, our culture is not going to survive. But at the same time, I think it’s unfair to expect that the pharmaceutical industry carry the cost of that. It should be western societies in general. And we should, no question about it.

ER: Are you planning on heading up deCODE for the foreseeable future?

KS: I will probably lead the company at least throughout this weekend. Let’s put it that way.

ER: Where do you see the company in ten years?

KS: Ten years from now we will have put several drugs on the market and we will be first and foremost looked upon as a drug company.

ER: Iceland is this wee nation. Do you think it’s overly ambitious in terms of some of its goals of being world leaders in certain fields, like the University of Iceland recently announcing that it intends to be in the world’s top 100 universities? 
 
KS: It seems to be an Icelandic national sport to set yourself goals that you can definitely not achieve.

ER: But is it good to set them? To set the bar that high?

KS: I don’t give a damn whether it is right or wrong. I think it’s just one of those things that people like to do.

ER: When you decided to set up deCODE in Iceland after living in the United States for several years, were there any factors other than access to the genealogical information that played into that decision?

KS: I was just convinced that we would be able to do good genetics here. Of course, I was also influenced by the fact that I was born here and my family has lived here for 1,100 years. There is a better fit between my genetic background and this place than any other place. It doesn’t matter whether I like it or not.

ER: Do you like it?

KS: I find the people incredibly boring but I like the country. [Pauses.] No, no, that is not true. I like the people. This is a good place. This is just home. That always has a certain amount of attraction. There was a famous American writer by the name of Thomas Wolfe who said, “You can never go back”. He’s just colossally wrong. You can always go back.