When a DNA Testing Firm Goes Bankrupt, Who Gets the Data?

wiedzmin writes "DeCODE Genetics, a genetics research firm from Iceland, has filed for bankruptcy in the US, and Saga Investments, a US venture capital firm, has already put in a bid to buy deCODE’s operations, raising privacy concerns about the fate of customer DNA samples and records. The company hasn’t disclosed how many clients signed up for its service, but provides a number of customer testimonials on its site, including Dorrit Mousaieff, Iceland’s first lady."

Re:privacy

[ColdWetDog]

From the DE code site:

The user owns their genetic data and therefore we do not keep the data locked from the user in the deCODEme website. Users are free to download the genotypes from the Genetic Scan, however, we urge them to ensure the security of the data once it is on their computer, e.g. by encrypting the data file.

So, it seems like the whole issue is moot unless the new owner wants to blast through a listed policy. A client's 'personal data' is somewhat more at risk:

User attributes, public or private, will be used by deCODE only to gather statistical aggregate information about the users of the deCODEme website. Such analysis may include, but is not limited to; counting the number of users grouped by age, or associating genetic variants with any of the self reported user attributes. In the process of presenting any such statistical information, deCODE will ensure that users identities are not exposed. deCODE may disclose your personal information only if we believe such action is necessary to: comply with the law or legal process served upon deCODE or to protect and defend the rights or property of deCODE in relation to your agreement with deCODEme. Except for the above, deCODE will under no circumstances provide any 3'rd party, including insurance companies, health management organizations, hospitals, and government agencies, access to any of your personal data or data derived from your samples, unless you grant us an explicit authorization in your privacy settings.

Not much see here, move along.

Re:Love it...

[greed]

The phrase you're looking for is "vendor lock-in". You can only access your files and your data with The Chosen And Approved Tools.

And, frankly, once your company was on the annual maintenance bus, there's no way the vendor would want to provide extra features, like generic export... they know you're screwed if you try to leave.

Occasionally, that tactic fails, and they lose a maintenance stream. But it usually works. Especially if the next software release has Magic Special Feature everyone at the client site wants. (Which will need all new servers, and upgraded workstations, and more SAN, and better networking, and when you finally get it deployed, you'll find out they lied right at your C?O's face. Again. And yet he's not held accountable for continuing to pay for their crap.)