50 THE SCIENTIST | the-scientist.com
PROFILE© DECODE GENETICSK
ári Stefánsson remembers exactly where he was when
he formulated the idea for his company, deCODE
Genetics. It was 1995, and he had recently moved from
the University of Chicago to Harvard University. “I was sitting
in Starbucks at the Beth Israel Hospital, and I put together
this narrative for identifying genetic variants of a large num-
ber of diseases using data from a large number of people and
also figuring out the structure of a population,” he says. “I
proposed to do this in Iceland because the Icelandic popula-
tion has the advantage of having started from a small number
of colonizing individuals,” leading to what’s called a “founder
effect.” He reasoned that because of this founder effect, the
number of disease-associated genetic variants would be rela-
tively small for each individual disease, so they’d be easier to
identify among people in Iceland.Stefánsson was a seasoned molecular biology and protein bio-
chemistry researcher with a focus on neuroscience, but he had
never done human population genetics studies. Still, he realized
that such genetic analyses were the only way to probe the nature
of human diseases in a model-independent w ay. “ Yo u can look
for [genetic] variants without prior ideas of what causes the dis-
ease, so you free yourself from the necessity of beginning with a
hypothesis, which I thought was very liberating.”
After that d ay, there was no turning back, Stefánsson says.
He was determined to form this company. “I realized that to
make a significant contribution to the field of genetics, the scope
was too large to fit into academic research and to obtain the
proper grant funding.” So Stefánsson went to venture capitalists
in New York City, San Francisco, and Los Angeles to convince
them to fund his company.
While his goal was to find genetic variants at the root of com-
mon diseases, he sold his idea to investors by proposing that
deCODE would turn a profit by finding novel drug targets for
pharmaceutical companies and by using human genetics data
to identify subpopulations that would be more likely to respond
to certain treatments—what is today called precision medicine.Pitching this idea, he convinced seven companies to give him
a total of $12 million in the span of six weeks. “I didn’t know
much about how to raise funding,” he says. “I was just this eccen-
tric man from Iceland who was telling potential investors his
story.” Stefánsson moved back to Iceland in 1996 and began to
build deCODE from scratch. “I thought that would take four
years,” he says, “but instead it took almost 20.”STARTING WITH BOOKS
Stefánsson was born and grew up in Reykjavik. He was the second
youngest of five children. “I was in the worst position in the order
of children that you can think of, the child that tends to get the
least attention,” he says. He doesn’t recall being starved of his par-
ents’ attention, although that is how his eldest sister remembers it,
he says. Stefánsson’s father was a radio journalist, writer, and then
a member of Iceland’s parliament, while his mother stayed home
with the kids.
At a young age, Stefánsson was more interested in books and
writing than in science. His father wrote biographies and published
an autobiography of his early life, growing up in an Icelandic fish-
ing village, that “straddled fiction and nonfiction,” Stefánsson says.
Stefánsson was a prolific reader and aspired to become a writer too.
“When I was growing up, popular writers in Iceland had the status
pop stars have elsewhere,” he says.
Iceland was a relatively poor country then. “Our family was eco-
nomically not at all privileged, but we had cultural privileges.... We
were encouraged to read good literature, to write, and to be creative.”
Stefánsson also enjoyed the outdoors, fishing with his father in the
summer and riding horses.
Stefánsson excelled academically. He entered the College of Reyk-
javik in 1966 and majored in math. After graduating, Stefánsson went
to medical school—following the lead of his best friend because he
couldn’t decide what to do next. At the University of Iceland Medi-
cal School in Reykjavik, Stefánsson initially wanted to pursue psy-
chiatry but then switched to neurology. “I was interested in the
brain for the same reason as I am interested in it still today—the
brain is the last frontier of biology, it is the organ we don’t under-
stand, the organ of consciousness and emotion, which define us as
a species,” he says. “I think it requires an extraordinarily dull mind
not to be fascinated by the brain.”
After completing medical school in 1976, Stefánsson was
accepted into the neurology residency program at the University
of Chicago. He had missed the deadline to apply for that academic
year, but the neurology department chair, Barry Arnason, was aAfter a career as a neurologist in the United States, Kári Stefánsson founded Iceland-based deCODE
Genetics to explore what the human genome can tell us about disease and our species’ evolution.BY ANNA AZVOLINSKYMaster Decoder
Yo u free yourself from the necessity of
beginning with a hypothesis, which I thought
was very liberating.