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DeCode s Stefansson Addresses Audience s Concerns About Data Access And Security


MADISON, Wis.--Since the highly controversial program to record the genetic profile of the population of Iceland began a few months ago, fewer than two percent of the nation's 275,000 citizens have refused to participate, according to Kari Stefansson, head and founder of DeCode Genetics, the Icelandic bioinformatics firm authorized by the government to gather the data.

That cooperation has come in spite of mostly negative publicity: A public relations firm hired by DeCode found that 75 percent of 700 news articles about the project that appeared prior to passage of a law permitting it were unfavorable.

Stefansson was invited by the University of Wisconsin Program in Medical Ethics and the Ethics Committee of the University of Wisconsin Hospital and Clinics to speak here recently about DeCode's project, which he said is designed to gain understanding of genetic markers for disease by correlating data from Iceland's healthcare network with its citizens' genetic and genealogical data.

As an example of the sort of question the project seeks to answer, Stefansson noted that in Iceland emphysema occurs only among smokers. Yet among smokers, only 15 percent develop the disorder, and they come from four large families. Understanding the genetic factors could help elucidate the origins of the disease and the way environmental factors such as smoking interact with an individual's genetics.

Responding to some common concerns about the project, Stefansson emphasized that DeCode does not intend to deprive academic researchers of free access to genetic data, and said he is eager to see foreign academicians collaborate with Icelandic researchers on scientific projects. Companies, however, will pay, he said.

Confidentiality, Stefansson assured the audience of physicians and researchers, will be protected by a doubly encrypted database. He downplayed concerns about invasion of privacy, noting that healthcare data has been centralized in Iceland for 49 years without being abused. To those worried about insurance companies using the data to discriminate, Stefansson suggested criminalizing such practices.

Iceland's physicians will access the data in the form of markers relevant to certain diseases. No patient names will be used; instead, certain characteristics will be linked to a particular disease. It would be up to physicians to match those characteristics to particular patients.

And while he spoke of his "visceral dislike" for the idea of patenting a "part of my own body," he said the practice is the only way to pay the $500 million cost of bringing drugs to market.

--Harvey Black

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