Genomics pioneer fired from firm he founded: ‘It was not easy to domesticate me’

Kári Stefánsson, who last month left the Icelandic genetics company deCODE, spoke to Nature about his legacy

Kári Stefánsson’s genomics firm deCODE became an early leader in conducting genome-wide association studies.Credit: Halldor Kolbeins/AFP via Getty

It’s been a month since Kári Stefánsson, the founder and former chief executive of the pioneering Icelandic genomics company deCODE genetics, says he was summarily fired by deCODE’s parent company, the biotechnology giant Amgen, and Stefánsson is his usual candid — some have said abrasive — self.

“The possibility certainly exists that I’m simply a dislikable individual that they wanted to get rid of,” he says. “A significant proportion of my old friends would agree with that.”

Stefánsson, a neurologist and neuroscientist, left a faculty position at Harvard Medical School in Boston, Massachusetts, to found deCODE in 1996. The company convinced a large proportion of Icelanders to share their genomic data, and a controversial 1998 law enabled deCODE to create a national database containing medical records from Iceland’s healthcare system.

The firm was an early leader in conducting genome-wide association studies (GWAS) that linked common single-letter DNA variations to people’s risk of developing complex diseases such as type 2 diabetes¹ and schizophrenia² , as well as other traits (I attended a talk in the 2000s at which Stefánsson said they had even found a gene variant associated with enjoying crossword puzzles). Thanks mainly to deCODE’s efforts, Icelanders accounted for 11.5% of GWAS participants between 2007 and 2017, one study found³.

“The amazing thing is that in this tiny little country with a population of about 390,000 people, we managed to build up a genetics organization that was second to none,” Stefánsson says.

The importance of chaos

After financial troubles forced deCODE into bankruptcy in 2009 and a subsequent takeover by private investors, Amgen bought the firm in late 2012 for US$415 million. Stefánsson says that deCODE has operated more or less autonomously from Amgen for most of the past 12 years.

“We have had a very free-spirited atmosphere where people have worked on the assumption that chaos is a very important beginning point to all research you do,” Stefánsson says.

Stefánsson attributes his downfall to a recent shift in deCODE’s relationship with Amgen, which, he says, sought closer integration between the two. “When you are working in a very goal-oriented work environment to serve drug discovery and development, this is a very noble activity, but you lose some of that freedom.”

Stefánsson says he was blindsided when, on 1 May, while he was visiting Amgen’s headquarters in Thousand Oaks, California, the company’s vice-president for research and development, Jay Bradner, told him his services were no longer needed at deCODE.

“I was asked to come to another building, put into a room where Jay Bradner sat in front of me and said, ‘You are fired’, basically. Before I arrived back in Iceland, they had sent out a press release announcing my departure from deCODE,” he says. “I think it is not a graceful way of parting with the founder of the company who had run it for 29 years.”

Amgen declined to comment on Stefánsson’s characterization of his dismissal. But in a statement to Nature, a representative said the decision “reflects a strategic evolution in the way our deCODE and other Amgen scientists work together to advance research in service of patients”.