8 ms·

"Wojcicki stressed that all customers involved had agreed to let their DNA be used for medical research when they signed up for the tests." I've used 23andme a

"Wojcicki stressed that all customers involved had agreed to let their DNA be used for medical research when they signed up for the tests." I've used 23andme and it's VERY clear when you choose to share or not share your DNA.

missosoup 7y ago
Yes but no. https://time.com/5349896/23andme-glaxo-smith-kline/ https://time.com/5349896/23andme-glaxo-smith-kline/ While 23andMe has technically adhered to the original terms of service, they've been sharing your data without your consent with their new parent firms like pharma giant GSK (the same one described in this article) which purchased partial ownership of the company and therefore ownership of the data. You see, giving data to your parent firm is not technically giving data to a third party. This was the business model all along. The 'customers' were the product, and the real customers were pharmaco. Getting the products (you) to pay for the cost of their own sequencing so the data is effectively free was a stroke of genius. Not only are you giving away incredibly valuable data about yourself only a tiny fraction of which is returned back to you in the form of a report, you're paying for the cost to collect it. It's brilliant. You've been duped by the dupe that everyone saw coming.
- mywittyname 7y ago
  > You've been duped by the dupe that everyone saw coming. Not only that, this is one of the benevolent aspects of 23&Me that people saw coming. It's only a matter of time before this information trickles to insurance companies.
  - missosoup 7y ago
    But wait, it gets better. The data is now permanently out there which means it's only a question of time until it leaks to insurance companies and bad actors, but the data is not only about the individual who submitted their DNA but everyone related to them. I'm sure GP's children will love them for selling out their data to future employers and insurers.
    - chr1 7y ago
      This would be a concern if DNA was something secret like a password, but it isn't, it falls off you all the time in the form of hair and skin cells, so if there was something valuable in your DNA, your employers could get it easily anyway. And if your DNA was useful to insurers you would pay yourself for them to get it, because knowing that your risk of dying from certain disease is higher is also required for preventing that. In general trying to keep DNA secret to prevent discrimination is a losing game, a better strategy is preventing discrimination itself, which we already have to do for DNA variations that have visible manifestation. Moreover if the number of people who need protection from discrimination increases, we'll get better at preventing it, which would be useful for the people who are being discriminated now.
      - Faark 7y ago
        > your employers could get it easily anyway I really hope that would be illegal here in the EU. It being physically possible (or even easy) doesn't make it okay. Not having the dataset easily available is one safety layer to prevent discrimination. No, it sadly doesn't help in all cases. Its unlikely there will ever be something that can, unless maybe you believe in perfectly implemented government policy reeducating us or controlling our behavior.
    - shadowgovt 7y ago
      I'm curious what "bad actors" you imagine with a DNA dataset. Targeted viral agents to hunt and kill only shadowgovt's? If someone wanted to do that, raiding my trash for a half-eaten sandwich is a lot easier way to get the data they want then hoping I upload it to 23andme.
      - vengefulduck 7y ago
        I think they were probably referring to the more mundane use of insurance companies buying the data and raising premiums for people with genetic risk factors. Which IMO seems very plausible.
        7y ago
  - kube-system 7y ago
    US health insurers cannot even possess genetic information for underwriting purposes. https://en.m.wikipedia.org/wiki/Genetic_Information_Nondiscrimination_Act https://en.m.wikipedia.org/wiki/Genetic_Information_Nondiscr...
    - missosoup 7y ago
      You have no idea how many ways there are to adhere to the letter of that law while ignoring the intent. There are entire multinational businesses built specifically to facilitate these kinds of data exchanges while keeping it technically legal. The health insurer doesn't need the genome. It just needs a number from 1 to 10 from a 'de-identified' source to multiply their scores by.
      - kube-system 7y ago
        Fair, but they still can't rate my plan with that number. ACA plan premiums can only be set based on 5 factors: age, location, tobacco use, individual vs. family enrollment, and plan.
        Techonomicon 7y ago
        Sure, for now. We would all be naiive to believe that insurance companies wouldn't lobby to be able to use other such information continually if they had it until they can use it to charge you more.
        sib 7y ago
        Such a strange concept that we say that insurance can't be rated according to significant risk factors.
        kube-system 7y ago
        The state of health insurance in the US would be better described as a "private social health benefit program". Insurance is effective at protecting people from uncertain financial risks, but the demands of the public have gradually changed the function of health insurance to include many things outside of that. The question was never "what functions do insurance companies do efficiently?", the question has always been "what health benefits do people deserve?". Unfortunately, these questions have different answers.
  - matz1 7y ago
    Yes, there are saying information want to be free. These data should eventually be public anyway, yes including to insurance company. The solution should be even more transparency, rather than privacy. The sooner we embrace and adapt, the better.
- jryan49 7y ago
  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
- ailideex 7y ago
  I don't see how that article supports the claim that you are making. From the article > A 23andMe spokesperson told TIME that data privacy is a “top priority” for the company, emphasizing that customer data isn’t used in research without consent, and that GlaxoSmithKline will only receive “summary statistics from analyses 23andMe conducts so that no single individual can be identified.” Also, if I buy some shares in Amazon I don't get have all their client data.
  - take_a_breath 7y ago
    Amazon is a publicly traded company. How does that compare to 23andMe? There are obvious loopholes to the statement “no single individual can be identified”.
    - ailideex 7y ago
      Shareholders are still shareholders even if the company is not publicly traded/listed. GSK is a shareholder of 23andMe - not it's parent company. 23andMe is not a subsidiary of GSK. GSK does not even own a majority share in 23andMe: https://www.gsk.com/media/5349/annual-report-2018.pdf https://www.gsk.com/media/5349/annual-report-2018.pdf > 23andMe in which the Group holds 14.5%. You can also find a list of subsidiaries of GSK in there and you will note that 23andMe is not listed among them.
      - take_a_breath 7y ago
        GSK invested $300 million into 23andMe and created an exclusive collaboration agreement [1]. To be clear, these things happened together, one doesn't exist without the other. If a publicly traded-company has more than 5% of outstanding shares owned by a single entity, they have to file an SEC Form 13D. This is a typical cut-off to indicate an activist investor [2]. Far less than the 14.5% GSK owns. Without knowing who owns the other 85.5% of 23andMe (or visibility into their board and voting structure), we have no idea who controls the company. You would need to spend about $44 billion to own 5%, or 24.8 million shares, of Amazon. I'm still not clear on how GSK's purchase of 14.5% of 23andMe along with the exclusive agreement that came with it is the same as buying a single share of Amazon stock. [1] https://www.cnbc.com/2018/07/24/glaxosmithkline-23andme-team-up-on-genetics-driven-drug-research.html https://www.cnbc.com/2018/07/24/glaxosmithkline-23andme-team... [2]https://www.investopedia.com/terms/s/schedule13d.asp https://www.investopedia.com/terms/s/schedule13d.asp
- JohnFen 7y ago
  Hmmm. I'm going to have to investigate this more thoroughly. If it's true, then I'll delete my data at 23&me (and hope that data deletion actually does what it says).
- dahinds 7y ago
  This is not what the article says, and it is false. No customer data has been shared with GSK.
freeflight 7y ago
Do they actually actively ask for a choice during the process or is it rather a right they reserve for themselves, buried in hundreds of pages of ToS?
- jryan49 7y ago
  Yes, it's directly asked on it's own page during the sign up processs, with lots of details. At least when I signed up.

missosoup 7y ago

Yes but no. https://time.com/5349896/23andme-glaxo-smith-kline/ https://time.com/5349896/23andme-glaxo-smith-kline/ While 23andMe has technically adhered to the original terms of service, they've been sharing your data without your consent with their new parent firms like pharma giant GSK (the same one described in this article) which purchased partial ownership of the company and therefore ownership of the data. You see, giving data to your parent firm is not technically giving data to a third party. This was the business model all along. The 'customers' were the product, and the real customers were pharmaco. Getting the products (you) to pay for the cost of their own sequencing so the data is effectively free was a stroke of genius. Not only are you giving away incredibly valuable data about yourself only a tiny fraction of which is returned back to you in the form of a report, you're paying for the cost to collect it. It's brilliant. You've been duped by the dupe that everyone saw coming.

mywittyname 7y ago
> You've been duped by the dupe that everyone saw coming. Not only that, this is one of the benevolent aspects of 23&Me that people saw coming. It's only a matter of time before this information trickles to insurance companies.
- missosoup 7y ago
  But wait, it gets better. The data is now permanently out there which means it's only a question of time until it leaks to insurance companies and bad actors, but the data is not only about the individual who submitted their DNA but everyone related to them. I'm sure GP's children will love them for selling out their data to future employers and insurers.
  - chr1 7y ago
    This would be a concern if DNA was something secret like a password, but it isn't, it falls off you all the time in the form of hair and skin cells, so if there was something valuable in your DNA, your employers could get it easily anyway. And if your DNA was useful to insurers you would pay yourself for them to get it, because knowing that your risk of dying from certain disease is higher is also required for preventing that. In general trying to keep DNA secret to prevent discrimination is a losing game, a better strategy is preventing discrimination itself, which we already have to do for DNA variations that have visible manifestation. Moreover if the number of people who need protection from discrimination increases, we'll get better at preventing it, which would be useful for the people who are being discriminated now.
    - Faark 7y ago
      > your employers could get it easily anyway I really hope that would be illegal here in the EU. It being physically possible (or even easy) doesn't make it okay. Not having the dataset easily available is one safety layer to prevent discrimination. No, it sadly doesn't help in all cases. Its unlikely there will ever be something that can, unless maybe you believe in perfectly implemented government policy reeducating us or controlling our behavior.
  - shadowgovt 7y ago
    I'm curious what "bad actors" you imagine with a DNA dataset. Targeted viral agents to hunt and kill only shadowgovt's? If someone wanted to do that, raiding my trash for a half-eaten sandwich is a lot easier way to get the data they want then hoping I upload it to 23andme.
    - vengefulduck 7y ago
      I think they were probably referring to the more mundane use of insurance companies buying the data and raising premiums for people with genetic risk factors. Which IMO seems very plausible.
      - 7y ago
- kube-system 7y ago
  US health insurers cannot even possess genetic information for underwriting purposes. https://en.m.wikipedia.org/wiki/Genetic_Information_Nondiscrimination_Act https://en.m.wikipedia.org/wiki/Genetic_Information_Nondiscr...
  - missosoup 7y ago
    You have no idea how many ways there are to adhere to the letter of that law while ignoring the intent. There are entire multinational businesses built specifically to facilitate these kinds of data exchanges while keeping it technically legal. The health insurer doesn't need the genome. It just needs a number from 1 to 10 from a 'de-identified' source to multiply their scores by.
    - kube-system 7y ago
      Fair, but they still can't rate my plan with that number. ACA plan premiums can only be set based on 5 factors: age, location, tobacco use, individual vs. family enrollment, and plan.
      - Techonomicon 7y ago
        Sure, for now. We would all be naiive to believe that insurance companies wouldn't lobby to be able to use other such information continually if they had it until they can use it to charge you more.
      - sib 7y ago
        Such a strange concept that we say that insurance can't be rated according to significant risk factors.
        kube-system 7y ago
        The state of health insurance in the US would be better described as a "private social health benefit program". Insurance is effective at protecting people from uncertain financial risks, but the demands of the public have gradually changed the function of health insurance to include many things outside of that. The question was never "what functions do insurance companies do efficiently?", the question has always been "what health benefits do people deserve?". Unfortunately, these questions have different answers.
- matz1 7y ago
  Yes, there are saying information want to be free. These data should eventually be public anyway, yes including to insurance company. The solution should be even more transparency, rather than privacy. The sooner we embrace and adapt, the better.
jryan49 7y ago
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
ailideex 7y ago
I don't see how that article supports the claim that you are making. From the article > A 23andMe spokesperson told TIME that data privacy is a “top priority” for the company, emphasizing that customer data isn’t used in research without consent, and that GlaxoSmithKline will only receive “summary statistics from analyses 23andMe conducts so that no single individual can be identified.” Also, if I buy some shares in Amazon I don't get have all their client data.
- take_a_breath 7y ago
  Amazon is a publicly traded company. How does that compare to 23andMe? There are obvious loopholes to the statement “no single individual can be identified”.
  - ailideex 7y ago
    Shareholders are still shareholders even if the company is not publicly traded/listed. GSK is a shareholder of 23andMe - not it's parent company. 23andMe is not a subsidiary of GSK. GSK does not even own a majority share in 23andMe: https://www.gsk.com/media/5349/annual-report-2018.pdf https://www.gsk.com/media/5349/annual-report-2018.pdf > 23andMe in which the Group holds 14.5%. You can also find a list of subsidiaries of GSK in there and you will note that 23andMe is not listed among them.
    - take_a_breath 7y ago
      GSK invested $300 million into 23andMe and created an exclusive collaboration agreement [1]. To be clear, these things happened together, one doesn't exist without the other. If a publicly traded-company has more than 5% of outstanding shares owned by a single entity, they have to file an SEC Form 13D. This is a typical cut-off to indicate an activist investor [2]. Far less than the 14.5% GSK owns. Without knowing who owns the other 85.5% of 23andMe (or visibility into their board and voting structure), we have no idea who controls the company. You would need to spend about $44 billion to own 5%, or 24.8 million shares, of Amazon. I'm still not clear on how GSK's purchase of 14.5% of 23andMe along with the exclusive agreement that came with it is the same as buying a single share of Amazon stock. [1] https://www.cnbc.com/2018/07/24/glaxosmithkline-23andme-team-up-on-genetics-driven-drug-research.html https://www.cnbc.com/2018/07/24/glaxosmithkline-23andme-team... [2]https://www.investopedia.com/terms/s/schedule13d.asp https://www.investopedia.com/terms/s/schedule13d.asp
JohnFen 7y ago
Hmmm. I'm going to have to investigate this more thoroughly. If it's true, then I'll delete my data at 23&me (and hope that data deletion actually does what it says).
dahinds 7y ago
This is not what the article says, and it is false. No customer data has been shared with GSK.

freeflight 7y ago

Do they actually actively ask for a choice during the process or is it rather a right they reserve for themselves, buried in hundreds of pages of ToS?

jryan49 7y ago
Yes, it's directly asked on it's own page during the sign up processs, with lots of details. At least when I signed up.