Iceland's Public Supports Database, But Scientists Object

On Dec. 17, 1998, Iceland's parliament, the Althing, gave the go-ahead for a Delaware-based biotechnology company, deCODE Genetics Inc., to use existing health and genealogy records to establish a nationwide "health sector database ... with the aim of increasing knowledge in order to improve health and health services."1 The public's participation was presumed--citizens were given six months to "opt out" of the plan. By June 17, 1999, with only about 9,000 of the country's 270,000 residents of

Ricki Lewis
Jul 18, 1999

On Dec. 17, 1998, Iceland's parliament, the Althing, gave the go-ahead for a Delaware-based biotechnology company, deCODE Genetics Inc., to use existing health and genealogy records to establish a nationwide "health sector database ... with the aim of increasing knowledge in order to improve health and health services."1 The public's participation was presumed--citizens were given six months to "opt out" of the plan.

By June 17, 1999, with only about 9,000 of the country's 270,000 residents officially opted out, it was clear that the public had agreed to take part--or, put more accurately, had failed to disagree. This came as no surprise. "The polls have shown 88 percent of the population supports the database. I've been on the road a long time, and have talked to everyone, and there's almost universal support," says Kari Stefansson, founder and CEO of deCODE.

But despite what seems like a successful maneuver...