What I want to know is, who they share the data with? Do the insurance companies get our genome?
Come on people, there should be no more precious data to you, than the genome of you and your family. Yet facebook users seem more concerned about their social network privacy than HN members are about their genome privacy.
For insurance companies, this could be a total actuarial GOLDMINE and it would probably even be worth them paying us for the data.
23andMe research may involve collaboration with external parties; however, these external parties will only have access to pooled data stripped of identifying information. 23andMe will never release your individual-level data to any third party without asking for and receiving your explicit authorization to do so.
As part of our commitment to protecting the privacy of our research participants, we have also obtained a Certificate of Confidentiality from the U.S. Department of Health and Human Services. This certificate allows 23andMe to protect research participants’ data from involuntary disclosure, including subpoenas from federal, state, and local authorities.
>Do the insurance companies get our genome?
It is nice that their website includes reassuring language. But really, how stable is that policy in the face of changing corporate owners, changing political administration (romney?), changing supreme court justices, changing geopolitics?
Genome data is of permanent importance. To be able to, even in 50 years, look back at genome records of today, will still be very valuable (especially when combined with genealogy records...).
Look at privacy trends, storage trends, and trends in govt accountability and transparency. Make no mistake, once our sequences are in corporate databases, there is no going back.
I look forward to user-driven cryptographic genome tools, which will allow us to inspect our own genomes, while maintaining personal control over our entire genome (ie., never having to hand the whole sequence over to a commercial or govt entity).
>But really, how stable is that policy in the face of changing corporate owners, changing political administration (romney?), changing supreme court justices, changing geopolitics?
That's a valid point, but a few things reassure me. Firstly that confidentiality cert from DHHS probably isn't going to be made useless by a political entity any time soon (and I'd assume, though would need to research, that such a cert would also apply to any buyers should 23AM get picked up by someone else, and probably carries some requirements for them as well)
Even then, I doubt within the next 60 or so years left on my lifespan that there will be any shenanigans in that area... and after I'm gone, they can do whatever the hell they want with my sequence :)
I'd imagine that, given enough time and cost reduction, services like this will become nationalized, where your genome is sequenced at birth for identity and health purposes.
It's OK. Nobody gets your genome. It would be suicidal for them to share, plus there are laws on the books (GINA at the federal level, a stronger law recently passed in CA).
Also, quite a few people have been posting their data openly, for example here: http://opensnp.org/ . So far I am not aware of any adverse effects. Not saying there won't be any ever, but I would be a lot more paranoid about my browser history.
The Genetic Information Nondiscrimination Act was passed 4 years ago. It makes it illegal for insurance companies and employers to discriminate based on genetic information.
In the long-term, it's unlikely that you'll be able hide your genome. Sequencing technology is only going to get cheaper and more advanced. People slough off cells like crazy. You'll have to live in a spacesuit if you want to avoid leaving your genetic information everywhere.
Note that in 13 months (in the US) pre-existing conditions will no longer be excludable (subject to a few complexities, yada yada). That rules out the worst potential abuse. It's unclear to me how "insurance company" access to this data would even be an inarguably bad thing. I can see a lot of good resource planning that could come from a large body of genome data.
Yeah, you're right. Though I'm generally curious and I'd like to know more about this part of me, scientifically. Is there some other way I can find that?
And as for insurance, I think that applies in the US where insurance companies are, well, evil. In AU, or CAN or some other country where medicine is provided to everyone, this actually seems like GOOD information to have on hand.
This is ridiculous. While signing up, I got this message (I hate my state sometimes...):
23andMe is currently unable to process saliva samples collected in or mailed from the state of New York. The New York Department of Health considers our Personal Genome Service a test requiring a lab license and direct physician involvement.
If you or the recipient of the Spit Kit intend to collect your sample and mail it from outside the state of New York, please select the "Ship to New York" button below. Upon receipt of your Spit Kit, you or the Spit Kit recipient will be required to affirm under penalty of law that the sample for the Spit Kit has not been collected in or mailed from the state of New York."""
I thought it was interesting that I saw the full price flash on the screen briefly before I saw my discounted price so I looked into the JS and sure enough they are swapping out offer urls that look like this: /special_offer/49NOV2012/?json=true
I wonder what their threshold is for offering this as the permanent price? I know I've never considered it before b/c of the price. Heck, I didn't consider it when I got the $99 offer. But when I got $49, I ordered two.
I did 23andme a year or two ago. I found out I have a really boring genome. No real diseases or unexpected ancestry (I guess I was secretly hoping I was adopted from Russian/Jewish royalty or martians or something?).
It's certainly worth $49 to me to know this (I think I paid $99 under a FNF deal a while ago; I know one of the founders, who is awesome and a great entrepreneur).
The only real risk I see is if your account is compromised somehow, but at least for me, there's nothing so sensitive in my account that I'd care.