8 ms·

23&me doesn't share data without consent. They explictly tell you that they'd like to use your data for research and ask you to opt in.

missosoup 7y ago
This is false. 23andMe shares data with invested parent organisations regardless of consent, and is not required to disclose the fact because they're legally not 3rd parties. See https://news.ycombinator.com/reply?id=21815295&goto=item%3Fid%3D21814595%2321815295 https://news.ycombinator.com/reply?id=21815295&goto=item%3Fi...
- burnte 7y ago
  Your use of their program is consent, they tell you when you get the kit.
  - taneq 7y ago
    There's a pretty significant difference between "when you use their service you can opt-in to have your data added to the dataset" and "buried in the EULA is a clause saying they own your genes."
  - Nullabillity 7y ago
    Consent is not freely given if it's a requirement for something else.
    - wasdfff 7y ago
      Looks like every end user agreement is bs by that metric too
      - lovich 7y ago
        That is a legitimate argument people make and also a reason companies don't want to test their EULA's in court
      - delecti 7y ago
        Yes, they are. And GDPR at least seems to rather explicitly agree with that sentiment. Consent buried in a document isn't real consent.
        Xelbair 7y ago
        Yeah, and you cannot 'bundle' consent.
    - gmanley 7y ago
      In this case it totally is. Your free to not use 23andMe if you don't consent. I do think, however, it shouldn't be buried in the EULA but communicated clearly.
      - Fnoord 7y ago
        > Your free to not use 23andMe if you don't consent That is not how consent works. If I am selling you an apple, but thereby you give me consent to use its genetics for research, and without that we do not do business, then there is nothing optional about it; no opt-in, no opt-out. Opt-in is when the flag is disabled by default, and you can enable it if you want to, and use the product regardless of your choice. Opt-out is when the flag is enabled by default, and you can disable it if you want to, and use the product regardless of your choice.
        matz1 7y ago
        That is how consent should work, if I don't consent I should not buy your apple. Buying your apple is optional, I'm not required to buy your apple. Opt-in is when I buy your apple. Opt-out is when I don't buy your apple.
        misterman0 7y ago
        You're not buying apples, though. You're buying "apples+X". That's a different from "apples". If your seller is upfront about that then I and people who want just an apple can go somewhere else for fruit. Most, though, aren't upfront about it.
        matz1 7y ago
        If you want to buy just apples then you should buy it from other seller who just sells apples.
        Fnoord 7y ago
        That is up to our governments to decide if such is allowed or not. For example, it isn't allowed to sell a gun or drugs with an apple (at least not here in The Netherlands, YMMV). That you can decide to not go for the entire package is not what we disagree on (apart from above, I suppose). What we were discussing is that the consent is optional; it is not in any of these examples. It is part of the package deal; then you don't call it opt-in or opt-out, as that allows you to opt-in or opt-out of something which is otherwise not in your direct advantage, but is in the other party's advantage.
    - dkonofalski 7y ago
      I think a clearer phrasing of that is "Consent is not freely given unless it's explicit". I'm fine with giving consent as long as I'm clear on what that is. General consent for using a service, to me, doesn't include using my data and/or information outside of what's needed to provide that service.
    - BurningFrog 7y ago
      This idea would really upend contract law if applied there!
    - austhrow743 7y ago
      Trade, no, interacting with others in general; ruled nonconsensual. You read it here first folks!
  - threatofrain 7y ago
    Ah I see there’s the opt in. In that case Microsoft telemetry is opt in too. You bought into Windows and agreed with the EULA after all.
    - Fnoord 7y ago
      It appears some people in this thread use a rather creative version of "opt in" [1]. There is nothing "opt" about what has been described here, nor about Microsoft telemetry (it was opt-out last time I checked). [1] https://en.wikipedia.org/wiki/Opt-in_email https://en.wikipedia.org/wiki/Opt-in_email
      - enkid 7y ago
        I believe that's his point
      - Xelbair 7y ago
        Looking as you cannot completely disable telemetry in windows 10 i fail to see how it is opt-in, or even opt-out. It is always on.
        Fnoord 7y ago
        I don't use Windows 10, but I from what I understand Microsoft had to make it GDPR compliant. I'm not sure they succeeded entirely with that (last time I checked, the German government did not find it GDPR compliant. Regardless, at the very least it was an improvement [which isn't an excuse]).
        justinclift 7y ago
        > Microsoft had to make it GDPR compliant. Not really. It's more like they have an army of lawyers paid so they can claim GDPR compliance, and delay/suppress or negotiate deals for years (if not decades) anything that comes up to say their not. That being said, apparently there are already ongoing legal cases around GDPR complaints for MS. No idea how those will end up.
- ailideex 7y ago
  Who are 23andMe's parent companies (https://en.wikipedia.org/wiki/Parent_company https://en.wikipedia.org/wiki/Parent_company)? > In the United Kingdom, it is generally held that an organisation holding a 'controlling stake' in a company (a holding of over 51% of the stock) is in effect the de facto parent company of the firm, having overriding material influence over the held company's operations, even if no formal full takeover has been enacted. HINTS: GSK (UK based) is not one of them. 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%.
- dekhn 7y ago
  Here's the 23&Me Research Consent doc that you agree to: https://www.23andme.com/about/consent/ https://www.23andme.com/about/consent/ Is there something specifically missing from that? it seems like you're suggesting they are doing somethign which is not covered here, or they're trying to be "sneaky", but I don't think that's the case. They have always made it fairly clear what the long game is, and "collect genetic information and share it with legitimate researchers to enable drug discovery" was a major part of it. I see a lot of folks suggesting 23&Me is being sneaky, or underhanded, or going out of its way to cloak these sorts of exchanges. I do not agree with those interpretations. Note: I am generally sympathetic to the idea of widely sharing genomic information and believe that good consent forms are transparent. This form is closer to what I'd like to see from a wider range of less ethical organizations.
  - jonas21 7y ago
    This looks pretty good to me. First, it appears to be opt-in: > Giving consent by checking the appropriate box below means that you agree to let 23andMe researchers use your Genetic & Self-Reported Information for 23andMe Research, as described above. And they have a reasonable policy if you decide you want to opt out: > At any time, you may choose to change your consent status to either take part in 23andMe Research or to withdraw all or some of your Genetic & Self-Reported Information from 23andMe Research. Your consent status is located in the 23andMe "Settings" page. ... Choosing not to give consent or withdrawing from 23andMe Research will not affect your access to your Genetic Information or to the Personal Genome Service.
- endorphone 7y ago
  This has been claimed multiple times and it's totally untrue. GSK is not a "parent company". It is a minor investor. This also doesn't give them some ability to demand access.
throwaway_tech 7y ago
>They explictly tell you that they'd like to use your data for research Is there not a difference between using your data for research...and selling it to a pharmaceutical company attempting to develop a commercial drug? Seems there was a misrepresentation in giving up their DNA, and those people should have rights to any drugs developed as a result.
- deleted 7y ago
  [deleted]
- filoleg 7y ago
  Who do you think does most of the pharmaceutical research? According to some quickly googleable info, private funding for pharmaceuticals is about 5 times that of public NIH research [0]. And before we assume that it all goes into the executive pay, turns out that private pharma in the US reinvests more of its revenues back into research and development than any other industry in the US (according to the same source). 0. https://www.drugcostfacts.org/public-vs-private-drug-funding https://www.drugcostfacts.org/public-vs-private-drug-funding
  - throwaway_tech 7y ago
    What does that have to do with obtaining HIPPA/DNA data the way they did? What does big pharma reinvesting more of its revenue back into R&D have anything to do with obtaining peoples DNA through any means but directly from the owners of the DNA? Big Pharma also spends more in lobbying efforts than any other industry...in fact double the next industry (tech)...in fact they spend in lobbying what the #2 and #3 industries (tech and insurance) spend together. Were you aware big pharma lobbying goes towards R&D tax credits for themselves?
  - ajoy 7y ago
    not really : https://www.statnews.com/2019/12/10/large-pharma-companies-provide-little-new-drug-development-innovation/ https://www.statnews.com/2019/12/10/large-pharma-companies-p...
  - _jal 7y ago
Sir_Substance 7y ago
crmrc114 shares almost all of their DNA with their parents, children, siblings and cousins, in addition to the mentioned grandparents. I'll bet you a dollar that neither crmrc114 nor 23&me asked /all/ the stakeholders in this particular transaction for consent.

missosoup 7y ago

This is false. 23andMe shares data with invested parent organisations regardless of consent, and is not required to disclose the fact because they're legally not 3rd parties. See https://news.ycombinator.com/reply?id=21815295&goto=item%3Fid%3D21814595%2321815295 https://news.ycombinator.com/reply?id=21815295&goto=item%3Fi...

burnte 7y ago
Your use of their program is consent, they tell you when you get the kit.
- taneq 7y ago
  There's a pretty significant difference between "when you use their service you can opt-in to have your data added to the dataset" and "buried in the EULA is a clause saying they own your genes."
- Nullabillity 7y ago
  Consent is not freely given if it's a requirement for something else.
  - wasdfff 7y ago
    Looks like every end user agreement is bs by that metric too
    - lovich 7y ago
      That is a legitimate argument people make and also a reason companies don't want to test their EULA's in court
    - delecti 7y ago
      Yes, they are. And GDPR at least seems to rather explicitly agree with that sentiment. Consent buried in a document isn't real consent.
      - Xelbair 7y ago
        Yeah, and you cannot 'bundle' consent.
  - gmanley 7y ago
    In this case it totally is. Your free to not use 23andMe if you don't consent. I do think, however, it shouldn't be buried in the EULA but communicated clearly.
    - Fnoord 7y ago
      > Your free to not use 23andMe if you don't consent That is not how consent works. If I am selling you an apple, but thereby you give me consent to use its genetics for research, and without that we do not do business, then there is nothing optional about it; no opt-in, no opt-out. Opt-in is when the flag is disabled by default, and you can enable it if you want to, and use the product regardless of your choice. Opt-out is when the flag is enabled by default, and you can disable it if you want to, and use the product regardless of your choice.
      - matz1 7y ago
        That is how consent should work, if I don't consent I should not buy your apple. Buying your apple is optional, I'm not required to buy your apple. Opt-in is when I buy your apple. Opt-out is when I don't buy your apple.
        misterman0 7y ago
        You're not buying apples, though. You're buying "apples+X". That's a different from "apples". If your seller is upfront about that then I and people who want just an apple can go somewhere else for fruit. Most, though, aren't upfront about it.
        matz1 7y ago
        If you want to buy just apples then you should buy it from other seller who just sells apples.
        Fnoord 7y ago
        That is up to our governments to decide if such is allowed or not. For example, it isn't allowed to sell a gun or drugs with an apple (at least not here in The Netherlands, YMMV). That you can decide to not go for the entire package is not what we disagree on (apart from above, I suppose). What we were discussing is that the consent is optional; it is not in any of these examples. It is part of the package deal; then you don't call it opt-in or opt-out, as that allows you to opt-in or opt-out of something which is otherwise not in your direct advantage, but is in the other party's advantage.
  - dkonofalski 7y ago
    I think a clearer phrasing of that is "Consent is not freely given unless it's explicit". I'm fine with giving consent as long as I'm clear on what that is. General consent for using a service, to me, doesn't include using my data and/or information outside of what's needed to provide that service.
  - BurningFrog 7y ago
    This idea would really upend contract law if applied there!
  - austhrow743 7y ago
    Trade, no, interacting with others in general; ruled nonconsensual. You read it here first folks!
- threatofrain 7y ago
  Ah I see there’s the opt in. In that case Microsoft telemetry is opt in too. You bought into Windows and agreed with the EULA after all.
  - Fnoord 7y ago
    It appears some people in this thread use a rather creative version of "opt in" [1]. There is nothing "opt" about what has been described here, nor about Microsoft telemetry (it was opt-out last time I checked). [1] https://en.wikipedia.org/wiki/Opt-in_email https://en.wikipedia.org/wiki/Opt-in_email
    - enkid 7y ago
      I believe that's his point
    - Xelbair 7y ago
      Looking as you cannot completely disable telemetry in windows 10 i fail to see how it is opt-in, or even opt-out. It is always on.
      - Fnoord 7y ago
        I don't use Windows 10, but I from what I understand Microsoft had to make it GDPR compliant. I'm not sure they succeeded entirely with that (last time I checked, the German government did not find it GDPR compliant. Regardless, at the very least it was an improvement [which isn't an excuse]).
        justinclift 7y ago
        > Microsoft had to make it GDPR compliant. Not really. It's more like they have an army of lawyers paid so they can claim GDPR compliance, and delay/suppress or negotiate deals for years (if not decades) anything that comes up to say their not. That being said, apparently there are already ongoing legal cases around GDPR complaints for MS. No idea how those will end up.
ailideex 7y ago
Who are 23andMe's parent companies (https://en.wikipedia.org/wiki/Parent_company https://en.wikipedia.org/wiki/Parent_company)? > In the United Kingdom, it is generally held that an organisation holding a 'controlling stake' in a company (a holding of over 51% of the stock) is in effect the de facto parent company of the firm, having overriding material influence over the held company's operations, even if no formal full takeover has been enacted. HINTS: GSK (UK based) is not one of them. 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%.
dekhn 7y ago
Here's the 23&Me Research Consent doc that you agree to: https://www.23andme.com/about/consent/ https://www.23andme.com/about/consent/ Is there something specifically missing from that? it seems like you're suggesting they are doing somethign which is not covered here, or they're trying to be "sneaky", but I don't think that's the case. They have always made it fairly clear what the long game is, and "collect genetic information and share it with legitimate researchers to enable drug discovery" was a major part of it. I see a lot of folks suggesting 23&Me is being sneaky, or underhanded, or going out of its way to cloak these sorts of exchanges. I do not agree with those interpretations. Note: I am generally sympathetic to the idea of widely sharing genomic information and believe that good consent forms are transparent. This form is closer to what I'd like to see from a wider range of less ethical organizations.
- jonas21 7y ago
  This looks pretty good to me. First, it appears to be opt-in: > Giving consent by checking the appropriate box below means that you agree to let 23andMe researchers use your Genetic & Self-Reported Information for 23andMe Research, as described above. And they have a reasonable policy if you decide you want to opt out: > At any time, you may choose to change your consent status to either take part in 23andMe Research or to withdraw all or some of your Genetic & Self-Reported Information from 23andMe Research. Your consent status is located in the 23andMe "Settings" page. ... Choosing not to give consent or withdrawing from 23andMe Research will not affect your access to your Genetic Information or to the Personal Genome Service.
endorphone 7y ago
This has been claimed multiple times and it's totally untrue. GSK is not a "parent company". It is a minor investor. This also doesn't give them some ability to demand access.

throwaway_tech 7y ago

>They explictly tell you that they'd like to use your data for research Is there not a difference between using your data for research...and selling it to a pharmaceutical company attempting to develop a commercial drug? Seems there was a misrepresentation in giving up their DNA, and those people should have rights to any drugs developed as a result.

deleted 7y ago
[deleted]
filoleg 7y ago
Who do you think does most of the pharmaceutical research? According to some quickly googleable info, private funding for pharmaceuticals is about 5 times that of public NIH research [0]. And before we assume that it all goes into the executive pay, turns out that private pharma in the US reinvests more of its revenues back into research and development than any other industry in the US (according to the same source). 0. https://www.drugcostfacts.org/public-vs-private-drug-funding https://www.drugcostfacts.org/public-vs-private-drug-funding
- throwaway_tech 7y ago
  What does that have to do with obtaining HIPPA/DNA data the way they did? What does big pharma reinvesting more of its revenue back into R&D have anything to do with obtaining peoples DNA through any means but directly from the owners of the DNA? Big Pharma also spends more in lobbying efforts than any other industry...in fact double the next industry (tech)...in fact they spend in lobbying what the #2 and #3 industries (tech and insurance) spend together. Were you aware big pharma lobbying goes towards R&D tax credits for themselves?
- ajoy 7y ago
  not really : https://www.statnews.com/2019/12/10/large-pharma-companies-provide-little-new-drug-development-innovation/ https://www.statnews.com/2019/12/10/large-pharma-companies-p...
- _jal 7y ago

Sir_Substance 7y ago

crmrc114 shares almost all of their DNA with their parents, children, siblings and cousins, in addition to the mentioned grandparents. I'll bet you a dollar that neither crmrc114 nor 23&me asked /all/ the stakeholders in this particular transaction for consent.