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An Icelander decodes the data

Yale Medicine Magazine, 1999 - Fall / 2000 - Winter


Discovered in the Middle Ages by Scandinavian explorers, Iceland offered its early settlers a harsh and barren landscape punctuated by the occasional volcanic explosion. So inhospitable was the island that all but a handful of its 270,000 inhabitants can trace their lineage to a few thousand ancestors. Over the centuries, that isolation has created a virtual treasure of genetic knowledge waiting to be mined.

Native son and geneticist Kari Stefánsson, M.D., very likely will be the first to plumb that mine. His company, deCode Genetics, has joined forces with the pharmaceutical industry to search for mutant genes, isolate them and devise therapies for disease. Stefánsson’s ambitions have riled privacy advocates in Iceland and elsewhere, and many are worried his data will fall into the wrong hands. Much ado about nothing, Stefánsson said when he stopped at Yale in June to deliver the Abraham Ribicoff Lecture at psychiatry grand rounds: Safeguards, such as encryption of patient records, are built into his project. Besides, the benefits of the work are enormous. It will create high-tech jobs in Iceland, modernize the country’s medical data systems and, most important, improve human health, he said.