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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."
sell the customer data to some health insurance company.
“This clearly introduces a layer of uncertainty beyond what people expected when they signed up,” she told the Times. “People do need to double check what they are signing up to. These companies often use broad consent, and I worry whether people know what their data might be used for in the long term.”
Personally I feel like your genetic information is always YOUR data. Call it a biological copyright if you wish. There's only one you, and you inherited the code used to make you.
This is as close to a modern inalienable right as I've yet seen.
Customer data should be considered the property of the customer; the decision as to what happens to that data should be accountable to the owner of that data which would be the person who provided that data in the first place. The data should not be transferred to a third party without permission from the owner of that information.
Sigs are too short to say anything truly profound so read the above post instead.
They probably didn't want to touch it in the paperwork, because if they came up with some sellable innovation based on your genes, they'd probably have to show they compensated you somehow for your genes to have a valid contract (mutual benefit being a part of contract law usually), and so if you saw that kind of language in the paperwork, you'd wonder why THEY weren't paying YOU to send them your DNA.
" raising privacy concerns " is a ubiquitous trigger cliche tossed out by people who want to inflame and enrage. It is as hollow as 'raising awareness' because neither are things that are raised, they are things you become, or become more so.
In this case, the persons or agents raising 'concern' are Wired and Times, who just might want readers so they can get ad money, and a lawyer that specializes in genomics, who just might want to attract clients for a law suit from which he'll collect big time (despite the fact that the as yet imaginary court battle would be over IP and privacy, neither of which are related to genomics). Oh, and a spokescritter from a group dedicated to watching tech and waving their arms, calling out 'Danger, Will Robinson' any time they can pretend something technological might be involved in anything that they can yell about and hope those who notice will join up and pay dues -- oh yes, so they can collect some cash too.
TFA states specifically who has the data and what they can and cannot do with it. In purchasing the assets of DeCODE, Saga is bound by law to protect the data. Despite this clear statement, the writers see fit to have "privacy advocates", that is, people who appoint themselves to speak on others' behalf without asking them, be 'concerned' that Saga will do this anyway.
In other words, the only people for whom this is an issue have a vested (ie. financial) interest in there being an issue, many of which have no relationship or arrangement with the persons whose data in involved in this imaginary 'concern' beyond their imaginary right to speak for those individuals.
I call BS on the bunch of them. There's not a single DeCODE client among them*. The only person interviewed who is actually involved is the CEO of DeCODE, who knows what needs to be done and is doing it. Not even Iceland's first lady is concerned, and wouldn't even be involved in this imaginary issue if it weren't for the fact that the Wired writer knew her premise was weak without an actual imaginary victim, so she dug until she found someone who was a client and tossed her name out in close proximity to concocted claims about privacy and such in order to lend the color of legitimacy to an otherwise transparent FUD spew.
"I may be synthetic, but I'm not stupid." -- Bishop 341-B
Íslensk Erfðagreining wich is the company that handles everything concerning the data and the research can not by law hand over the data to a second company. Decode is the parent company of Íslensk Erfðagreining. A little bit of research would have gotten you the knowledge that they can only use the private and medical information that they have gotten in research purposes and can never hand it over. This article just smells like fud to me.