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."

Noticeable lack of legalese in the paperwork

[mosel-saar-ruwer]

We sent off some DNA in our family last winter, and I was surprised at the lack of legalese in the paperwork.

In particular, nowhere in any of it did it state that we were surrendering any property rights [i.e. the documents addressed neither the physical property of the biological material, nor the intellectual property of the DNA code].

On the other hand, because of the lack of legalese in the paperwork, it also didn't say that the DNA facilities were surrendering any property rights [or the ability to assert property rights in the future], either.

But I'd be shocked if the courts ruled for the creditors rather than for the "patients", unless there was some very explicit contracts in which the "patients" surrendered their property rights [although, even there, I wouldn't be surprised if a court ruled that such a contract were invalid, on e.g. 13th Amendment [constitution.org] grounds].

Re:Time for an Amendment?

[gedrin]

I wonder what the complexities would be around copyrighting your own DNA data. It seems fairly straightforward, as long as you don't want your data used for anything. However, I'm not sure it would be all that easy to take advantage of medical services if everyone had their own EULA for their info. I can't imagine a doctor would agree to signing a random EULA from Joe Normal, or want to pay for a lawyer to review such a document.

Also, do you have the rights at all? Could the partnership that originally created the data claim the rights to it that information or is there an implicit transference of ownership at the age of majority? ;)

Not just deCODE

[cyber-dragon.net]

23andMe, a US company who has been collecting samples for two-three years now has had two rounds of layoffs in the last six months, the second of which was a third of the company. I think this should be a real concern for the customers of any of these companies, Navigenics, Pathways, deCODE, 23andMe etc.

Re:$5 says they...

[jc42]

sell the customer data to some health insurance company.

Sell it to researchers, since insurance company wouldnt benefit much from such a small set of DNA samples.

You're probably both right.

As many armchair econ theorists here have been pointing out repeatedly, the attempted purchaser is an American corporation. As such, their primary (and according to some, only) obligation is to the bank accounts of their officers and shareholders. If there's a commercial value to the information, they likely consider it immoral to not sell the information for whatever price the market will bear.

The fact that mere "citizens" might be upset by this only means that they'll do this quietly, with no public notice and no records of the sales available to outsiders. If we learn of the sales, it'll be far too late for us to do anything about it.

Expecting anything else is simply naive. We should be assuming that, if anyone has had the opportunity to collect a sample of our DNA, they have done so, and the information is in the databases of anyone willing to pay the asking price. This especially applies if you have ever had any dealings with a private, for-profit medical organization.

Re:$5 says they...

[jecblackpepper]

Of course the statistic on how many they allowed to die by refusing to pay out or by refusing to allow someone to get insurance in the first place is not available.