5 ms·

I think this is plainly untrue in any of the situations relevant to what we're discussing. Some "de-identified" health information can be used or disclosed wit

I think this is plainly untrue in any of the situations relevant to what we're discussing. Some "de-identified" health information can be used or disclosed without restriction under HIPAA, but it needs to genuinely not be possible to correlate back to an individual, which I don't think is something that's possible with what you're describing (at least if prior medical history and decisions factor into the execution of the program). Some health information can be released in the public interest (like for research) or for bettering healthcare operations, but that's not this either. It might be worth taking a look at https://www.hhs.gov/hipaa/for-professionals/privacy/laws-regulations/index.html https://www.hhs.gov/hipaa/for-professionals/privacy/laws-reg.... This is excluding stuff like 23AndMe genome sharing / Ancestry.com law enforcement collaboration, which might be what you're alluding to, but I believe it to be irrelevant in this case.

OutOfHere 2y ago
> it needs to genuinely not be possible to correlate back to an individual What you say is a theoretical goal. In practice, despite good efforts, there is no hard rule imposed by reality that 100% of records will totally remain anonymized.
- striking 2y ago
  Maybe it's unclear why I've brought this up. I understand it's not possible to keep everything locked down in a way that prevents my information from leaking. And as unfortunate as that is, that's not my concern with your original comment. I do not want that problem made worse. I don't care if it's already kind of bad. I have no idea why the problem already being bad would justify making it worse.
  - OutOfHere 2y ago
    I guess you forgot the part where you're a mortal human, and where biomedical data helps discover patterns to solve problems. Just you wait until you get old. Also forgot the part about exposing statewide corruption wrt claims.
    - striking 2y ago
      I'm not interested in your snark. I'm aware of my mortality and of statewide corruption. Those are not good reasons to publish my health data publicly even in an anonymized form. The people who might be able to fix my mortality are already allowed to have my data (whether I'm happy or not about that is moot as you've made clear yourself). That does not change my belief that the scheme you propose for "exposing statewide corruption" is a bad idea.
      - OutOfHere 2y ago
        > are already allowed to have my data You mean the ones that license it commercially? Their interest is not in fixing you; it is in exploiting you and your wallet, so please remember the distinction. To really fix it (you), access to that data needs to be democratized. But since people (you) don't want that to happen, I guess mortality will remain in the cards. In the end, people (you) get what you deserve.
autoexec 2y ago
Yet somehow data brokers know every medical condition you've ever had and they sell it to anyone who will pay them. See also: https://www.nytimes.com/2019/11/11/business/google-ascension-health-data.html https://www.nytimes.com/2019/11/11/business/google-ascension... https://www.scientificamerican.com/article/how-data-brokers-make-money-off-your-medical-records/ https://www.scientificamerican.com/article/how-data-brokers-... https://arstechnica.com/science/2019/11/would-you-trust-google-with-your-medical-records-it-might-already-have-them/ https://arstechnica.com/science/2019/11/would-you-trust-goog... https://slate.com/technology/2022/06/health-data-brokers-privacy.html https://slate.com/technology/2022/06/health-data-brokers-pri...
- striking 2y ago
  If this is supposed to be some sort of "own", you're missing my point. I do not want my HIPAA-protected information going any further than it needs to, I do not want these practices to be encouraged. I understand HIPAA etc. are leaky, that people are inventing new ways to leak my information to people who want to buy it, and so on. That is different from taking the pipeline of information directly from my insurance provider and firing it off into the public eye in a way that prevents it from being deleted or forgotten, even if it may be anonymized to some extent. I understand the situation is not good. I want it to not be made worse. I'm not sure if you ignored the sibling thread where I felt I made myself clear.
  - autoexec 2y ago
    I promise that I wasn't attacking you. More just commiserating over the sad state of the situation we find ourselves in as of right now. I don't know what the solution to this problem will look like, but (like so many other solutions) I'm also pretty sure that it won't involve a blockchain.

OutOfHere 2y ago

> it needs to genuinely not be possible to correlate back to an individual What you say is a theoretical goal. In practice, despite good efforts, there is no hard rule imposed by reality that 100% of records will totally remain anonymized.

striking 2y ago
Maybe it's unclear why I've brought this up. I understand it's not possible to keep everything locked down in a way that prevents my information from leaking. And as unfortunate as that is, that's not my concern with your original comment. I do not want that problem made worse. I don't care if it's already kind of bad. I have no idea why the problem already being bad would justify making it worse.
- OutOfHere 2y ago
  I guess you forgot the part where you're a mortal human, and where biomedical data helps discover patterns to solve problems. Just you wait until you get old. Also forgot the part about exposing statewide corruption wrt claims.
  - striking 2y ago
    I'm not interested in your snark. I'm aware of my mortality and of statewide corruption. Those are not good reasons to publish my health data publicly even in an anonymized form. The people who might be able to fix my mortality are already allowed to have my data (whether I'm happy or not about that is moot as you've made clear yourself). That does not change my belief that the scheme you propose for "exposing statewide corruption" is a bad idea.
    - OutOfHere 2y ago
      > are already allowed to have my data You mean the ones that license it commercially? Their interest is not in fixing you; it is in exploiting you and your wallet, so please remember the distinction. To really fix it (you), access to that data needs to be democratized. But since people (you) don't want that to happen, I guess mortality will remain in the cards. In the end, people (you) get what you deserve.

autoexec 2y ago

Yet somehow data brokers know every medical condition you've ever had and they sell it to anyone who will pay them. See also: https://www.nytimes.com/2019/11/11/business/google-ascension-health-data.html https://www.nytimes.com/2019/11/11/business/google-ascension... https://www.scientificamerican.com/article/how-data-brokers-make-money-off-your-medical-records/ https://www.scientificamerican.com/article/how-data-brokers-... https://arstechnica.com/science/2019/11/would-you-trust-google-with-your-medical-records-it-might-already-have-them/ https://arstechnica.com/science/2019/11/would-you-trust-goog... https://slate.com/technology/2022/06/health-data-brokers-privacy.html https://slate.com/technology/2022/06/health-data-brokers-pri...

striking 2y ago
If this is supposed to be some sort of "own", you're missing my point. I do not want my HIPAA-protected information going any further than it needs to, I do not want these practices to be encouraged. I understand HIPAA etc. are leaky, that people are inventing new ways to leak my information to people who want to buy it, and so on. That is different from taking the pipeline of information directly from my insurance provider and firing it off into the public eye in a way that prevents it from being deleted or forgotten, even if it may be anonymized to some extent. I understand the situation is not good. I want it to not be made worse. I'm not sure if you ignored the sibling thread where I felt I made myself clear.
- autoexec 2y ago
  I promise that I wasn't attacking you. More just commiserating over the sad state of the situation we find ourselves in as of right now. I don't know what the solution to this problem will look like, but (like so many other solutions) I'm also pretty sure that it won't involve a blockchain.