6 ms·

Sorry, but this is the classic "I have nothing to hide" argument in regards to privacy. If they want to market their services as "donate your DNA for research"

by dpcan 7y ago

Sorry, but this is the classic "I have nothing to hide" argument in regards to privacy. If they want to market their services as "donate your DNA for research" and then, as a side-note, we'll send you back some fun details about you... Fine. But right now, they sell it as a way to know about yourself, your family, genes, etc. Then millions of people wake up to the news to find out that their DNA was handed over to a pharma company.

drusepth 7y ago
It shouldn't be controversial to say that I value everyone on the planet having a higher quality of life more than I value a small subset of people's worry over losing privacy to a company that they not only willingly gave their DNA to, but also opted in during the signup process to use that DNA for health research. If they feel fooled for whatever reason (I assume because that research is being done by another company instead of 23andme directly) and are now claiming they've lost some semblance of privacy over deidentified data they already handed over, that pales in comparison to lifesaving cures that are enabled and made more likely by sharing such data. Quality of life for everyone > pedantics of what exact things you're opting into when you give your DNA to a genetic research company that dedicates a whole page in the signup flow to using your DNA for lifesaving research and cures.
- dkonofalski 7y ago
  >but also opted in during the signup process to use that DNA for health research. That is not the same thing as selling data to third-parties. Especially considering that 23andMe asks users questions and then shows results based on correlations, it's too easy for users to understand "opting in for health research" as research being done by 23andMe and not by a third-party.
- Faark 7y ago
  How kind of you to make this decision for all of your relatives. They now better take care to not leave any DNA traces when protesting against some upcoming authoritarian government. And no, those databases won't be deleted before a wannabe-king takes over. Or when signing up for health insurance a policy chain down the road. At that point the new treatment better be cheap enough to pay out of pocket... But seriously, how can you in good conscious claim this all being willingly when it's very nature shares info about other people as well. This feels like unaware people giving Facebook access to their phone book all over again, thus giving away all kinds of info about me. No, I don't want FB creating shadow profiles about me and certainly wasn't asked. Can we please find a way to not create piles of data about third parties? Since, if history has shown one thing, them being used against me is just a matter of time. Or, at least have in place strong protections by e.g. regulations?
  - shadowgovt 7y ago
    drusepth's relatives don't own drusepth's DNA. This would be similar to arguing that if I had an identical twin, I need my twin's consent to donate a photo of myself to a facial recognition library. But more generally, the arguments being raised here regarding risk of abuse of the data are predicated on tyrannical or illegal activities occurring. Instead of denying ourselves the benefits of cures derived from data such as this, why can we not build a society where the data is not abused? Human pro-social activity is a very powerful thing. If there are risks in unifying data, we should work to build a society that stewards those risks responsibly, we shouldn't try to cut ourselves off and hope the life of a data hermit serves us better. I mean, what other technologies should we deny ourselves? A tyrant can use tanks and troop transports to wage war on their citizens. Should we tear up the roads lest they be abused by tyranny?
    - asah 7y ago
      This is actually an interesting debate and suggests that individual consent isn't the ideal mechanism for DNA sharing vs (say) government regulation.
      - shadowgovt 7y ago
        I agree, but it's hard to establish good regulation in a space where society hasn't yet come to some consensus on the underlying philosophy that would guide such regulation, is the problem.
    - austhrow743 7y ago
      > drusepth's relatives don't own drusepth's DNA. This doesn't preclude drusepth from using their property in an assholish way. >This would be similar to arguing that if I had an identical twin, I need my twin's consent to donate a photo of myself to a facial recognition library. No, it'd just mean that you're an asshole if you do. >But more generally, the arguments being raised here regarding risk of abuse of the data are predicated on tyrannical or illegal activities occurring. Instead of denying ourselves the benefits of cures derived from data such as this, why can we not build a society where the data is not abused? Time scale. Societies come and go. To the extent that we don't have tyrannical ones they're not exactly long lived. Once you've given the data and power to the non-tyrannical government, you're screwed if tyranny ever swings around again. That's a huge gamble to make off of nothing given the history of all world governments. Seems far more likely they'll all be tyrannical again at some point than never again ever. >I mean, what other technologies should we deny ourselves? All of them. Technology is a perversion of our innate condition. A result of mate signalling gone off the rails. >A tyrant can use tanks and troop transports to wage war on their citizens. Should we tear up the roads lest they be abused by tyranny? Of course!

by dpcan 7y ago

drusepth 7y ago

It shouldn't be controversial to say that I value everyone on the planet having a higher quality of life more than I value a small subset of people's worry over losing privacy to a company that they not only willingly gave their DNA to, but also opted in during the signup process to use that DNA for health research. If they feel fooled for whatever reason (I assume because that research is being done by another company instead of 23andme directly) and are now claiming they've lost some semblance of privacy over deidentified data they already handed over, that pales in comparison to lifesaving cures that are enabled and made more likely by sharing such data. Quality of life for everyone > pedantics of what exact things you're opting into when you give your DNA to a genetic research company that dedicates a whole page in the signup flow to using your DNA for lifesaving research and cures.

dkonofalski 7y ago
>but also opted in during the signup process to use that DNA for health research. That is not the same thing as selling data to third-parties. Especially considering that 23andMe asks users questions and then shows results based on correlations, it's too easy for users to understand "opting in for health research" as research being done by 23andMe and not by a third-party.
Faark 7y ago
How kind of you to make this decision for all of your relatives. They now better take care to not leave any DNA traces when protesting against some upcoming authoritarian government. And no, those databases won't be deleted before a wannabe-king takes over. Or when signing up for health insurance a policy chain down the road. At that point the new treatment better be cheap enough to pay out of pocket... But seriously, how can you in good conscious claim this all being willingly when it's very nature shares info about other people as well. This feels like unaware people giving Facebook access to their phone book all over again, thus giving away all kinds of info about me. No, I don't want FB creating shadow profiles about me and certainly wasn't asked. Can we please find a way to not create piles of data about third parties? Since, if history has shown one thing, them being used against me is just a matter of time. Or, at least have in place strong protections by e.g. regulations?
- shadowgovt 7y ago
  drusepth's relatives don't own drusepth's DNA. This would be similar to arguing that if I had an identical twin, I need my twin's consent to donate a photo of myself to a facial recognition library. But more generally, the arguments being raised here regarding risk of abuse of the data are predicated on tyrannical or illegal activities occurring. Instead of denying ourselves the benefits of cures derived from data such as this, why can we not build a society where the data is not abused? Human pro-social activity is a very powerful thing. If there are risks in unifying data, we should work to build a society that stewards those risks responsibly, we shouldn't try to cut ourselves off and hope the life of a data hermit serves us better. I mean, what other technologies should we deny ourselves? A tyrant can use tanks and troop transports to wage war on their citizens. Should we tear up the roads lest they be abused by tyranny?
  - asah 7y ago
    This is actually an interesting debate and suggests that individual consent isn't the ideal mechanism for DNA sharing vs (say) government regulation.
    - shadowgovt 7y ago
      I agree, but it's hard to establish good regulation in a space where society hasn't yet come to some consensus on the underlying philosophy that would guide such regulation, is the problem.
  - austhrow743 7y ago
    > drusepth's relatives don't own drusepth's DNA. This doesn't preclude drusepth from using their property in an assholish way. >This would be similar to arguing that if I had an identical twin, I need my twin's consent to donate a photo of myself to a facial recognition library. No, it'd just mean that you're an asshole if you do. >But more generally, the arguments being raised here regarding risk of abuse of the data are predicated on tyrannical or illegal activities occurring. Instead of denying ourselves the benefits of cures derived from data such as this, why can we not build a society where the data is not abused? Time scale. Societies come and go. To the extent that we don't have tyrannical ones they're not exactly long lived. Once you've given the data and power to the non-tyrannical government, you're screwed if tyranny ever swings around again. That's a huge gamble to make off of nothing given the history of all world governments. Seems far more likely they'll all be tyrannical again at some point than never again ever. >I mean, what other technologies should we deny ourselves? All of them. Technology is a perversion of our innate condition. A result of mate signalling gone off the rails. >A tyrant can use tanks and troop transports to wage war on their citizens. Should we tear up the roads lest they be abused by tyranny? Of course!