deCode Genetics closes doors, questions about data raised

It’s one thing when some silly Web 2.0 social service gets sold, or shuts its doors, and our data either goes poof or gets bought up by whoever buys the service but what happens when that service is a company that holds our most personal information – our DNA?

This is the question being asked as deCode Genetics declares bankruptcy and becomes the property of another company who is known for doing whatever it has to to maximize the returns on its investments. In this case the company is Saga Investments and many are worried that it will find ways to monetize the DNA data of people who have used the 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 maximise returns on its investment, and could still make wider use of data that some subscribers may find uncomfortable. Pooled and anonymised information, for example, could be sold to academic researchers or pharmaceutical companies.

Dan Vorhaus, a lawyer with the US firm Robinson, Bradshaw and Hinson, which specialises in genomics, said that while the new management would be bound by deCODE’s customer agreements, these were often unclear and contradictory.

Source: Times Online

As has been proven before any supposed anonymized data can actually be “de-anonymize” the data. It is my opinion that if we are going to be silly enough to use services like this that there should be safeguards put in place to make sure that important and immensely personal data like can not be transferred for any reason.