Iceland faces a DNA dilemma: Whether to notify people carrying cancer genes

Kari Stefansson, founder of the biotech company DECODE, stands amid his office at the company’s headquarters in Reykjavik, Iceland on May 22.

to isolate genes that trigger diseases. For example, Icelanders carry just one mutation of BRCA2, a gene that causes breast cancer. Only 0.8 percent of Icelandic people possess the gene, but it holds an 86 percent probability of causing cancer in women who carry it, Stefansson said. It also threatens male carriers with a higher risk of untreatable prostate cancer.

Since the mid-1990s, Stefansson’s company DECODE Genetics Inc., has dominated the nation’s genomic research. Stefansson claims the company now can access a DNA database of 60,000 fully sequenced individuals, and another 180,000 whose genetic code has been partially sequenced.

The biotech company declared bankruptcy in 2009 amid Iceland’s financial crisis, but has since bounced back, with the help of Amgen, which purchased DECODE

in 2012 for $415 million. Over the last six years, DECODE has helped identify a gene variant linked to late-onset Alzheimer’s and another one that increases risk of osteoporosis and certain cancers.

With his slashing style and media charisma, Stefansson has become one of Iceland’s most well-known figures, said Dr. Bogi Andersen, an Iceland native and medical professor at the University of California, Irvine. “In Iceland, Kari is more prominent than Bjork,” he said, referring to the Icelandic pop singer.

But Stefansson is also enormously controversial. Outspoken, contemptuous of ethics purists, Stefansson has built a career on lobbying and sometimes bullying the Icelandic government. “It is outside the norms the way he has manipulated the agencies,” said Andersen.