March 19, 1999

While physicians, patients, and a host of privacy advocates have been sounding the alarm that Americans' most personal and confidential health information is becoming too easy for third parties to obtain, the government of Iceland has sold the rights to the genetic code of every person living in that country.

This unprecedented initiative will seem like a radical step to psychiatrists and their patients in the U.S. in particular, because of the stubborn stigma attached to receiving mental illness treatment. Yet this plan has the support of a majority of Icelanders, who are certain that the promised security precautions will do the job of protecting this sensitive information.

The government entered into an agreement with Roche Holdings, a Switzerland-based pharmaceutical giant, whose researchers are going to use the Iceland data to try to unravel genetic code mysteries. The genetic makeup of the 270,000 Icelanders provides fertile ground for such studies, because the overwhelmingly blond-haired, blue-eyed population is among the most homogeneous in the world.

The population suffers from higher than average rates of alcoholism, diabetes, colon cancer, and schizophrenia. These disorders thus make excellent targets for the researchers to investigate using Icelanders' DNA.

Roche Holdings is paying $200 million over five years for the privilege of having access to this treasure trove of data.

While backed by most Icelanders, support is my no means unanimous. One Reykjavik engineer, Jon Erlandsson, told the Washington Post that "Most doctors and scientists here in Iceland are in favor of the basic purpose of this project but find the proposed solution quite unethical and unrealistic." Others have raised the specter, familiar to Americans, of job discrimination, unapproved releases of information, and the prospect that patients will begin to withhold from their physicians information they view as particularly sensitive.