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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."
Thanks to people like Johannsson, a huge freezer in the basement of deCODE's gleaming, modern Reykjavík headquarters now holds blood samples from about 100,000 individuals, roughly half of Iceland's adult population. Using those samples, scientists at the company were able to zero in on their new anti-heart-attack compound. It's based on a gene known as LTA4H, first seen in mice, which governs the production of an enzyme called leukotriene A4 hydrolase. The enzyme plays a role in inflammation, a key factor in heart disease, and also encourages the buildup of cholesterol on blood-vessel walls.
And sure enough, Icelanders with a particular variant of the LTA4H gene turn out to be 40% more likely than average to have heart attacks. Looking outside the country, deCODE scientists found the variant gene in other populations--and discovered that in African Americans the increased risk is not 40% but a whopping 250%. That suggests the company's prospective drug--invented by Bayer and 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."
The idea of combing through populations for disease genes isn't unique to deCODE. Britain's UK Biobank, for example, will follow 500,000 volunteers for decades, trying to correlate genes, lifestyle and disease. And two initiatives being put together by the U.S. National Institutes of Health will look for nearly 20 diseases in up to 40,000 people. But with its long head start and Iceland's genetic advantages, deCODE could be hard to catch. So far the company has isolated 15 gene variants for 12 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."