The Iceland

The island is a genetic anomaly: settled by a few Scandinavians and Celts in the 9th century AD and relatively free of further immigration, is among the most homogeneous countries on earth genetically. And in late 1990, when scientists are racing to map the human genome, Stefansson realized that the genetic isolation of Iceland and unrivaled genealogical records become a goldmine for the isolation of genes.

Thus began a great genetic experiment in Iceland, an attempt to mine the gene pool of an entire country in search of the causes of - and potential cures for - some of the worst diseases in the world. And after years of controversy, frustrated hopes and stock bubbles burst, the effort is finally bearing fruit. During the last decade, deCODE Genetics, the company co-founded Stefansson in his hometown of Reykjavik, 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 increases the risk of type 2 diabetes. And within a few weeks, the company will begin the final phase of testing a drug based on a recently identified gene heart attack, which seems to be especially dangerous in African Americans. "I'm very excited," says Dr. Francis Collins, National Institutes of Health U.S. and leader of the Human Genome Project. "What deCODE is doing is clearly exciting, and I congratulate them."

In principle, his method is simple: find a disease-related gene, find someone with the disease, and then see how your DNA differs from the DNA of healthy people. In practice, however, individual genes rarely cause illness themselves, but tend to make people more susceptible. And in places with genetically mixed populations, the complex interaction between genes makes it difficult to find the risky ones. But in Iceland, with a uniform population and genealogies that show how each is related, genes tend to emphasize risk. The country of meticulous medical records provide even more data.

Ingenious as it was, Stefansson's plan quickly ran into trouble. To build a database of genomes, deCODE need blood samples from many Icelanders as possible, as well as access to health records. Parliament granted permission to exploit those records, along with an exclusive license to assemble, maintain and market the resulting data. Thousands of people donated blood, and many bought shares in deCODE well. But those shares, which rose to a maximum of $ 65 on a run spree in 1999 and 2000, fell to just $ 2 in the collapse of the dotcom bubble. They are about $ 9 today - and deCODE has not yet returned a profit. Investors lost a lot of money, and the company was forced to lay off dozens of employees.

Then in 1998 the U.S. Hoffmann - La Roche agreed to pay $ 200 million for the right to develop drugs based on some data of deCODE. The idea that a foreign company can take advantage of your personal information for many Icelanders are resisting. A woman named Ragnhildur Gudmundsdottir sued to keep the medical records of his late father entered the deCODE database term, citing the right to privacy, and in 2003 Iceland's supreme court ruled in his favor.