Word: stefansson
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...gene pool of an entire country in search of the root causes of--and potential cures for--some of the world's worst diseases. And after years of controversy, dashed hopes and burst stock bubbles, the effort is finally paying off. Over the past decade, deCODE Genetics, the company Stefansson co-founded in his home city of Reykjavík, has discovered more than a dozen genes linked to diseases ranging from stroke to schizophrenia. Last month, deCODE announced that it had found a gene that boosts the risk of Type 2 diabetes. And within a few weeks, the company will...
Ingenious as it was, Stefansson's plan quickly ran into problems. In order to build a database of genomes, deCODE needed blood samples from as many Icelanders as possible, as well as access to their health records. Parliament granted permission to tap into those records, along with an exclusive license to assemble, maintain and market the resulting data. Thousands of citizens donated blood, and many bought shares in deCODE as well. But those shares, which rose to a high of $65 in a frenzied run-up in 1999 and 2000, plunged to as low as $2 in the collapse...
Having lost its guaranteed access to every citizen's records, deCODE had to change tactics and approach people one by one. In return, the company promised that Icelanders will get any drug Hoffmann--La Roche develops out of the project for free until the patents run out. According to Stefansson, most have agreed to cooperate. "Ten percent of people have questions about the project," says Asmundur Johannsson, a Reykjavík resident. "Ninety percent approve of deCODE, and I am one of them...
...licensed by deCODE--could have a correspondingly large lifesaving effect, although even if it works, it could be several years before it reaches the U.S. market. Some critics are worried that insurers and employers might avoid anyone bearing the bad gene, making discrimination even worse than it already is. Stefansson scoffs at that notion: "You guys never needed genetics to discriminate against African Americans," he says. "You've done that completely unassisted by genetic discoveries...
...diseases, including stroke, schizophrenia, osteoarthritis and, most recently, diabetes. In addition to the heart-attack drug, it has medications in the pipeline for preventing asthma and atherosclerosis. Even when no drug is available, knowing you have a disease gene can be invaluable. "What it tells you," says Stefansson, "is whether you are at risk, and it gives you the opportunity to respond. This is liberating...