Decode's demise raises privacy worries

Published 25 November 2009

Icelandic company with genetic and medical records of thousands of customers closed its doors; the data might be sold on and end up in the hands of an unscrupulous company or individual

What happens to sensitive customer data when a personal genomics firm goes bust? Andy Coghlan writes that we are about to find out.

Decode Genetics of Reykjavik, Iceland, went bankrupt last week. Decode’s demise prompted speculation that its customers’ genetic and medical data might be sold on and end up in the hands of an unscrupulous company or individual.

More likely is that the data will be bought back by the company’s previous investors. “That means there will be no change in the current arrangements or conditions for oversight of the genetic and medical data,” says company spokesman Edward Farmer.

There is, however, no guarantee that this would be the case if such firms change hands in future, says Daniel Vorhaus, a personal genomics specialist at the law firm Robinson Bradshaw & Hinson in Charlotte, North Carolina.