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How CEO Anne Wojcicki Turned 23andMe Around After Falling Out with the FDA

53 points by pavornyoh 11y ago

aaronbrethorst 11y ago
tl;dr - she followed the rules.
- confluence 11y ago
  You don't have a "falling out" with regulatory agencies.
  - pccheck 11y ago
    The author ELIZABETH SEGRAN thinks people do. This is why overall the women's employment since 1950s led to the loss of competitiveness of American economy.
bsimpson 11y ago
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.
- 336f5 11y ago
  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.
  - bsimpson 11y ago
    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).
2skep 11y ago
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
- Karunamon 11y ago
  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.
  - DigitalJack 11y ago
    The part of the sentence you left out: unless required by law.
    - Karunamon 11y ago
      Pretty sure that applies to any and all companies regardless of what they put in their ToS...
      - btilly 11y ago
        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.
    - djur 11y ago
      That can be assumed to be true of any statement made in such a policy, regardless of whether it's there or not. No company can credibly claim that they will defy the law on your behalf.
deleted 11y ago
[deleted]
yuvadam 11y ago
Do they actually have customers? What kind of idiot hands over their entire genetic data to a for-profit corporation?
- zschuessler 11y ago
  They have a lot of customers. Many of my software engineering friends, myself included, are well aware of the privacy implications and got a kit anyway. - 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.
  - blub 11y ago
    Just so we're clear, we're talking here about a private company with an API, not a non-profit, foundation or anything that would indicate that they are working for the public interest. The FDA banned them from advertising their kits because there was no scientific proof that these kits are able to tell customers if they are at risk for something. So basically you've given away your genome data because you like making neat visualisations.
    - DigitalJack 11y ago
      They might be a for profit company, but they haven't actually made a profit. 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.
marcusgarvey 11y ago
Somebody tell Theranos....
desireco42 11y ago
Did she really? I think it still remains to be seen.
drcode 11y ago
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."
dominotw 11y ago
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.
- dogma1138 11y ago
  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.
- davak 11y ago
  Then you are lucky. You could have been told you have brca, huntingtons, or several other horrible genetic disease. A negative test is often the best result!

53 points by pavornyoh 11y ago

aaronbrethorst 11y ago

tl;dr - she followed the rules.

confluence 11y ago
You don't have a "falling out" with regulatory agencies.
- pccheck 11y ago
  The author ELIZABETH SEGRAN thinks people do. This is why overall the women's employment since 1950s led to the loss of competitiveness of American economy.

bsimpson 11y ago

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.

336f5 11y ago
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.
- bsimpson 11y ago
  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).

2skep 11y ago

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

Karunamon 11y ago
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.
- DigitalJack 11y ago
  The part of the sentence you left out: unless required by law.
  - Karunamon 11y ago
    Pretty sure that applies to any and all companies regardless of what they put in their ToS...
    - btilly 11y ago
      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.
  - djur 11y ago
    That can be assumed to be true of any statement made in such a policy, regardless of whether it's there or not. No company can credibly claim that they will defy the law on your behalf.

deleted 11y ago

[deleted]

yuvadam 11y ago

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

zschuessler 11y ago
They have a lot of customers. Many of my software engineering friends, myself included, are well aware of the privacy implications and got a kit anyway. - 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.
- blub 11y ago
  Just so we're clear, we're talking here about a private company with an API, not a non-profit, foundation or anything that would indicate that they are working for the public interest. The FDA banned them from advertising their kits because there was no scientific proof that these kits are able to tell customers if they are at risk for something. So basically you've given away your genome data because you like making neat visualisations.
  - DigitalJack 11y ago
    They might be a for profit company, but they haven't actually made a profit. 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.

marcusgarvey 11y ago

Somebody tell Theranos....

desireco42 11y ago

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

drcode 11y ago

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."

dominotw 11y ago

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.

dogma1138 11y ago
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.
davak 11y ago
Then you are lucky. You could have been told you have brca, huntingtons, or several other horrible genetic disease. A negative test is often the best result!