How CEO Anne Wojcicki Turned 23andMe Around After Falling Out with the FDA
fastcompany.com
fastcompany.com
More details can be found here: https://tracker.terminosycondiciones.es/en/doc/2058
23andMe will never release your individual-level Genetic Information and/or Self-Reported Information to any third party without asking for and receiving your explicit consent to do so
That sounds pretty cut and dried to me.
The first exception that comes to mind is tarsnap. Who does not only offer that promise, but offers code and reasoning for why it is impossible for them to compromise your data even if law enforcement comes calling!
Lavabit also comes to mind. While they could have technically compromised their customers, when law enforcement came calling (after Snowden famously used them), the owner chose to shut down instead of complying with the requests of law enforcement.
That said, such heroes are few and far between.
However, with the changes cited, they are lowering the level of protection they used to offer in order for their client companies to not be able to deconvolute data in order to build that table.
Users are informed of the changes, that is what matters.
None of the data has been useful/insightful, its been good for mere entertainment so far. I don't expect it to get any useful anytime soon.
For some time now I've wanted to try such service for kicks and giggles but the thought of getting a result like you have some gene which makes it more likely for you to get toe cancer by 700% which will pester me for the rest of my life even if it has very low scientific value always bugged me enough not too.
Sure if i was going to die I would rather know about it sooner than later, but I never thought that filling my head with the potentialities of mortality was warranted.
So, as long as they don't ban your account for scraping, you could probably write a script to get most of it. I see personalized data in the view-source, which is a good sign (it means they server-render the personalized bit).
- I like my genome is contributing to science. Not just privatized science, but anyone that wants to use the API.
- I like I'm able to find what I'm at risk for. For all the knowns now, and more once we continue to unravel the mysteries of the genome.
- I like the ability to use d3.js to make neat visualizations on my data and open source my work.
All of these pros outweigh the potential privacy issue for me. It comes down to: do I really care if someone steals my genome data? Even in the future, worst case scenario if you could spit out a clone using my genetic data, ultimately I'm not sure I really care.
I'm typically an open kind of guy, though. (Indeed, all my open source work is public domain) Thought I'd share an alternative opinion.
So basically you've given away your genome data because you like making neat visualisations.
I don't understand the mentality of your post. On the one hand, you seem to think that profit and public interest are mutually exclusive. They aren't. They are overlapping concerns, as in two circles on a venn diagram partially overlapping.
On a personal level, you make an admonishing statement that the parent gave away their data for "neat" visualizations. I infer from this that you are saying they are giving away more than they got. The opposite of this would be profit (getting more than you gave). So you don't like 23andme because they want to get more than they give, and you admonish the parent because they gave more than they got.
The FDA banned them from advertising, not because there was no scientific proof, but because they didn't know how to present the data in the way the FDA could understand.
Regulatory agencies have their own lingo and methods and they are obscure, requiring the use of people who's sole job is to be the adapter between the regulators and everyone else.
23andme made a mistake likely out of ignorance regarding just how difficult it is to navigate regulatory waters. The FDA didn't grant them rights to marketing because they did anything new technically. It was because they are doing new things bureaucratically.
But... the FDA didn't "understand" 23andme's data? And the company made an innocent mistake when it comes to presenting data? This letter from the FDA describes exactly what was and was not done and obliterates any arguments like the above: http://www.fda.gov/ICECI/EnforcementActions/WarningLetters/2...
Getting more than you give is the very definition of profit. It doesn't mean you don't give. It's a relative term. It is possible for both parties of an exchange to profit, from each party's point of view.
The letter you posted was the last in a series, where the FDA, after numerous attempts to explain what they needed, gave up and pulled the plug. It's like a divorce, there are often many attempts at reconciliation before the plug is pulled, but if communication isn't working for whatever reason, the papers are served. And usually pretty easy to understand at that point.
No you are not. Nobody is "aware" what 23 can do with your information just yet.
This is much different than signing up for a Facebook account. I bet 23 didnt figure the way to make serious money on this just yet. I mean after all they wont stop on $99 per client (minus costs).
If you're waiting for a non-profit to do this you're going to be waiting for a while. This is expensive and difficult.
* You also consent to your personal information, including sensitive information, being transferred in the event of a business transition such as a merger, acquisition by another company, or other transaction or proceeding. In such a case, your information would be used as set out in any pre-existing Privacy Statement.
* [...] As stated in any applicable Consent Document, however, Genetic Information and/or Self-Reported Information that you have previously provided and for which you have given consent to use in 23andMe Research cannot be removed from ongoing or completed studies that use the information. Our contracted genotyping laboratory may also retain your Genetic Information as required by local law and we may retain backup copies for a limited period of time pursuant to our data protection policies. [...]
Google is successful because it’s useful. These tests are useful. blah blah