DNA Testing Firm Goes Bust, But Where Does the Data Go?

A leading genetics company that has pioneered personal DNA testing in health assessments went bust yesterday, raising concerns about the sensitive data it holds.

DNA profiles belonging to thousands of people who have paid up to $1,000 for Internet genetic tests are to be transferred to a new organization, after deCODE Genetics filed for chapter 11 bankruptcy in a U.S. court.

The fate of the Icelandic company, which has never turned a profit despite making a string of discoveries about the genetic origins of common diseases, has fuelled fresh debate about access to DNA data. The genetic records of deCODE's customers will now be held by Saga Investments, a venture capital group that has agreed to buy deCODE’s core science operations, including its deCODEme personalized genetic testing service.

Kari Stefansson, deCODE’s chief executive, told The Times that ownership of genetic data remained with the company’s customers and that Saga would be bound by a privacy policy that prevents disclosure of data to third parties such as insurers, employers or doctors.

Industry experts said that Saga would want to maximize returns on its investment, and could still make wider use of data that some subscribers may find uncomfortable. Pooled and anonymized information, for example, could be sold to academic researchers or pharmaceutical companies.

For more information, read the full story at The London Times.