4 ms·

The article says they are just using de-identified, summary data, what's the problem?

missosoup 7y ago
Where to start. I could write an entire paper about this. It's incredibly difficult to truly de-identify data and it's incredibly easy to re-identify it. Making data truly anonymous usually also neuters the data for any kind of predictive models. 23andMe is selling either straight up raw data (which is totally allowed under the investment terms) or tightly grouped 'summary' data which can be trivially re-identified. If they were selling actually anonymous data it would be worth nothing because it would yield no predictions. Disclaimer: I work in ML/predictive analytics. 'anonymous data' is a marketing term for trivially reidentifiable data. If the data is truly anonymous then its predictive power tends towards 0 as does its market price. You don't think GSK dropped 300 mil on mostly useless data do you?
- streb-lo 7y ago
  Why do we care? Trying to keep genetic identity anonymous is security through obscurity. You have shed thousands of skin cells in the time it took for you to read this. If people want your DNA it's trivial to collect -- and will only get easier and more common. A better use of our time is to address the ramifications of public DNA and prevent it from being misused.
  - Real_S 7y ago
    I can send someone to follow you around to see where you go. Therefore, you do not mind if your GPS data is public? Now compare the cost of hacking into a database to the cost of obtaining millions of genomes by physically taking genetic material and then sequencing it. Then consider that your DNA is yours for the rest of your life. Simply because data can be obtained by some means does not make protecting that data useless.
    - streb-lo 7y ago
      No, that's a bad analogy. Following someone is manpower intensive. A better analogy would be sending someone to observe your hair color -- do you mind if that's public? As the value of DNA increases, people will collect it. Restaurants, washrooms, your employer, airlines, Uber etc. all could have trivially easy access to your DNA if they choose to.
      - missosoup 7y ago
        It's illegal to follow someone around to collect their location data. It's a pretty good analogy. Just because there is 'trivial' access to certain attributes of people doesn't mean that it's legal to capture those attributes, and even if you do capture them, they're worthless on the legal market. E.g. see SF ban on facial recognition.
        JoeAltmaier 7y ago
        Really? Public surveillance is explicitly allowed without warrant.
        streb-lo 7y ago
        Like you say, legal barriers can only prevent things that rely on a legal market, like insurance carriers from discriminating against people's genetic makeup. Against genetic weaponization and other state-sponsored uses it would be a bit like banning nuclear bombs -- a great idea for everyone but a foolish one for each individual state. And that's only if such legal barriers are even constructed which I'm not sure they will be. Look how the privacy battle has turned out thus far.
1024core 7y ago
Maybe you've not been paying attention to the news, but it is very easy to re-identify people with their genetic data. [1] https://www.telegraph.co.uk/news/2018/04/27/golden-state-killer-caught-using-genealogy-website-police-reveal/ https://www.telegraph.co.uk/news/2018/04/27/golden-state-kil... [2] https://www.latimes.com/california/story/2019-11-24/law-enforcement-dna-crime-cases-privacy https://www.latimes.com/california/story/2019-11-24/law-enfo... [3] https://www.usatoday.com/story/tech/nation-now/2018/04/27/ancestry-genealogy-dna-test-privacy-golden-state-killer/557263002/ https://www.usatoday.com/story/tech/nation-now/2018/04/27/an...
allovernow 7y ago
Why, in 2019, would you trust such a statement from a faceless corporate behemoth? Why, after the consistent abuses and lack of accountability across the corporate sphere, would you place any faith in a business's claim that they're just leaving what probably already amounts to billions of dollars of value on the table when there is effectively no penalty for covertly extracting said value at the cost of customer privacy? Why, after a decade+ of security breaches and poor data handling practices, would you trust a financially motivated, publicly traded company to properly anonimize data?
arrosenberg 7y ago
Easy to say, hard to do. HIPAA isn't enforced nearly as frequently as it should be.
jb775 7y ago
Computer algorithm can identify 99.98 percent of Americans from almost any available data set with as few as 15 attributes, such as gender, ZIP code or marital status. https://www.nytimes.com/2019/07/23/health/data-privacy-protection.html https://www.nytimes.com/2019/07/23/health/data-privacy-prote...

Where to start. I could write an entire paper about this. It's incredibly difficult to truly de-identify data and it's incredibly easy to re-identify it. Making data truly anonymous usually also neuters the data for any kind of predictive models. 23andMe is selling either straight up raw data (which is totally allowed under the investment terms) or tightly grouped 'summary' data which can be trivially re-identified. If they were selling actually anonymous data it would be worth nothing because it would yield no predictions. Disclaimer: I work in ML/predictive analytics. 'anonymous data' is a marketing term for trivially reidentifiable data. If the data is truly anonymous then its predictive power tends towards 0 as does its market price. You don't think GSK dropped 300 mil on mostly useless data do you?

streb-lo 7y ago
Why do we care? Trying to keep genetic identity anonymous is security through obscurity. You have shed thousands of skin cells in the time it took for you to read this. If people want your DNA it's trivial to collect -- and will only get easier and more common. A better use of our time is to address the ramifications of public DNA and prevent it from being misused.
- Real_S 7y ago
  I can send someone to follow you around to see where you go. Therefore, you do not mind if your GPS data is public? Now compare the cost of hacking into a database to the cost of obtaining millions of genomes by physically taking genetic material and then sequencing it. Then consider that your DNA is yours for the rest of your life. Simply because data can be obtained by some means does not make protecting that data useless.
  - streb-lo 7y ago
    No, that's a bad analogy. Following someone is manpower intensive. A better analogy would be sending someone to observe your hair color -- do you mind if that's public? As the value of DNA increases, people will collect it. Restaurants, washrooms, your employer, airlines, Uber etc. all could have trivially easy access to your DNA if they choose to.
    - missosoup 7y ago
      It's illegal to follow someone around to collect their location data. It's a pretty good analogy. Just because there is 'trivial' access to certain attributes of people doesn't mean that it's legal to capture those attributes, and even if you do capture them, they're worthless on the legal market. E.g. see SF ban on facial recognition.
      - JoeAltmaier 7y ago
        Really? Public surveillance is explicitly allowed without warrant.
      - streb-lo 7y ago
        Like you say, legal barriers can only prevent things that rely on a legal market, like insurance carriers from discriminating against people's genetic makeup. Against genetic weaponization and other state-sponsored uses it would be a bit like banning nuclear bombs -- a great idea for everyone but a foolish one for each individual state. And that's only if such legal barriers are even constructed which I'm not sure they will be. Look how the privacy battle has turned out thus far.

1024core 7y ago

Maybe you've not been paying attention to the news, but it is very easy to re-identify people with their genetic data. [1] https://www.telegraph.co.uk/news/2018/04/27/golden-state-killer-caught-using-genealogy-website-police-reveal/ https://www.telegraph.co.uk/news/2018/04/27/golden-state-kil... [2] https://www.latimes.com/california/story/2019-11-24/law-enforcement-dna-crime-cases-privacy https://www.latimes.com/california/story/2019-11-24/law-enfo... [3] https://www.usatoday.com/story/tech/nation-now/2018/04/27/ancestry-genealogy-dna-test-privacy-golden-state-killer/557263002/ https://www.usatoday.com/story/tech/nation-now/2018/04/27/an...

allovernow 7y ago

Why, in 2019, would you trust such a statement from a faceless corporate behemoth? Why, after the consistent abuses and lack of accountability across the corporate sphere, would you place any faith in a business's claim that they're just leaving what probably already amounts to billions of dollars of value on the table when there is effectively no penalty for covertly extracting said value at the cost of customer privacy? Why, after a decade+ of security breaches and poor data handling practices, would you trust a financially motivated, publicly traded company to properly anonimize data?

arrosenberg 7y ago

Easy to say, hard to do. HIPAA isn't enforced nearly as frequently as it should be.

jb775 7y ago

Computer algorithm can identify 99.98 percent of Americans from almost any available data set with as few as 15 attributes, such as gender, ZIP code or marital status. https://www.nytimes.com/2019/07/23/health/data-privacy-protection.html https://www.nytimes.com/2019/07/23/health/data-privacy-prote...