When a DNA Testing Firm Goes Bankrupt, Who Gets the Data? 114
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."
Destroy and burn them. (Score:1, Insightful)
Clearly, the answer is that any samples and documentation should be destroyed. A typical way of doing this is to shred any paper documentation, and incinerate it along with any tissue or DNA samples.
$5 says they... (Score:5, Insightful)
Time for an Amendment? (Score:5, Insightful)
“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.
Love it... (Score:2, Insightful)
$5 says they... (Score:3, Insightful)
privacy (Score:5, Insightful)
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.
Why retain the data? (Score:3, Insightful)
I'm wondering what their data retention policy is. I'm not sure about most companies or industries but AFAIK most businesses, financial companies and law firms are obligated to keep records for 7 to 10 years. Some might keep longer. Now I can understand if these guys want to keep the info for 2 year, in case there's an unsatisfied customer who wants their money back (for example, had test done elsewhere and theirs is different). If the retention policy of this industry permits indefinite, then there should be laws to protect customers including not only retention but sharing of information and proper deletion of records.
Re:$5 says they... (Score:4, Insightful)
No, it wouldn't be that obvious.
They will sell it to another DNA testing company, who happens to be owned by a V.C. fund, who are chaired by former Health Industry Executives, who are backed by a Health Insurance Company. Layers man, layers. Less scrutiny that way.
Re:Noticeable lack of legalese in the paperwork (Score:3, Insightful)
Re:$5 says they... (Score:4, Insightful)
Nope, can't do it. The data is an asset and it's still subject to whatever terms it was collected under. Just like the bank that wrote my mortgage may have gone bankrupt, but my payment and interest rate remain the same.
The data is also a medical record, and that comes with a whole slew of restrictions as well. In summary, the privacy implications are exactly the same as they were a year ago.
Re:Time for an Amendment? (Score:5, Insightful)
... and what would the restrictions be for "derivative works"?
You have to support them until they turn 18.
Decode went banktrupt (Score:3, Insightful)
But the company called Íslensk Erfðargreining is still running as before - and nothing has changed with their contracts between them and their donators or the government.
I have no reason why we should distrust the new owners of the company any less then the previous ones.
Raising BS Concerns (Score:5, Insightful)
" 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.
Nothing happens (Score:3, Insightful)
Re:This is why I protected myself (Score:2, Insightful)
> I dare them to clone me.
Y'know, some people would then clone you just because they wanted the dinosaur, not you.
Well, people other than Randal, maybe...
Re:Destroy and burn them. (Score:3, Insightful)
Clearly, the answer is that any samples and documentation should be destroyed
Clearly, you have overlooked the fact that we are talking about private companies here. What happens when a company goes bust? Another company buys it and its stock - in this case the DNA profiles etc. What did you expect? When you deal with private companies that is the way it is; which is why it would probably be better if it was handled by a public authority - they are after all somewhat accuntable to the public, and they don't go bankrupt so often.
Re:This is why I protected myself (Score:1, Insightful)
Have you heard about the new DARPA project to clone you?