
How CEO Anne Wojcicki Turned 23andMe Around After Falling Out with the FDA - pavornyoh
http://www.fastcompany.com/3052283/most-creative-people/how-ceo-anne-wojcicki-turned-23andme-around-after-falling-out-with-the-
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drcode
You mean "How the 23andMe marketing department put the best spin possible on a
massive FDA compliance failure by getting tech sites to write personality-
driven fluff pieces, putting the CEO in the best possible light."

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2skep
A number of changes to their terms of service over the last few days indicate
that the change in their business model may have come at the cost of user data
protection. See recent change diluting privacy protections enjoyed by their
users.

[http://imgur.com/ygrHxuY](http://imgur.com/ygrHxuY)

More details can be found here:
[https://tracker.terminosycondiciones.es/en/doc/2058](https://tracker.terminosycondiciones.es/en/doc/2058)

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Karunamon
Unchanged:

 _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.

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DigitalJack
The part of the sentence you left out: _unless required by law._

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Karunamon
Pretty sure that applies to any and all companies regardless of what they put
in their ToS...

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btilly
Almost, but not quite all!

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.

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dominotw
I've been their customer since the beginning and have participated in all
their upgrades.

 __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.

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dogma1138
I actually wonder about any potential adverse effects it might have.

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.

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desireco42
Did she really? I think it still remains to be seen.

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marcusgarvey
Somebody tell Theranos....

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bsimpson
It'd be nice if they offered some sort of backup. I fear I'm going to lose
access to all my health reports when they switch over to the parenting-centric
model.

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336f5
You can download your genotype SNP data as a backup. I don't know about the
health reports (are they so voluminous that you cannot open up each in a tab
and then save them all as a batch of HTML files?) but there's a partial
replacement in the form of the Promethease service which will take a SNP
export and try to summarize any interesting hits.

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bsimpson
If I scraped it myself, there'd be over 400 pages. Looks like they don't do
async fetches for the main pages until you use the risk indicator (e.g. to try
different age ranges to see when you're most likely to have a health problem).

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).

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aaronbrethorst
tl;dr - she followed the rules.

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confluence
You don't have a "falling out" with regulatory agencies.

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yuvadam
Do they actually have customers? What kind of idiot hands over their entire
genetic data to a for-profit corporation?

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BinaryIdiot
Is this comment a joke? What are they going to do with your gnome that you're
worried about? Considering, on average, dozens of companies have your social,
bank account information and other really important data why is it your gnome
that crosses the line?

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.

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atomical
The wait is over! I just had it done for free by a research study at U of M.
Check out genes for
good:[http://genesforgood.sph.umich.edu](http://genesforgood.sph.umich.edu)

~~~
scottcowley
Thanks for the tip! Just started the process for qualifying.

