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> So tell me, what harm have I done to myself by sharing this information? None, and yet you still aren't willing to put your name behind the statement "I'm h

> So tell me, what harm have I done to myself by sharing this information? None, and yet you still aren't willing to put your name behind the statement "I'm healthy as a fiddle and never use drugs except the occasional beer". Also -- and this will apparently come as a surprise to you -- people who have STDs, abuse drugs/alcohol, or have genetic disorders in their family don't necessarily want that info shared on the internet. Shocking, right?! Apparently pseudonymous internet griping is an essential right but participants in medical trials should -- post-facto -- have their entire medical history shared in a wy that's at significant risk of reidentification.

cogman10 5y ago
Frankly, putting up my name with my medical history has far less to do with having the two linked and far more to do with "I'd rather not have a future employer have an easy link to my social media information". Oh genetic disorders, you didn't ask about that earlier. My family is a carrier for cystic fibrosis. Is that something that's supposed to be super terrible to share? I'm not the GP, but frankly I think it's a little crazy how worried everyone is about being identified through round about methods in medical data. Google has a far better bead on exactly who I am than any doctor and, frankly, I'm far more worried about that advertising profile than I am about the "what if's" of my medical data being shared between hospitals and doctors (and potentially being leaked).
- jjulius 5y ago
  >... my name with my medical history... >My family... >... I'm far more worried about that advertising profile than I am about the "what if's" of my medical data... Again - yours. It's great that you're fine with your data being public, but as is evidenced by the way certain posts in this comment chain are being down/upvoted, clearly many other people share the opposite view and would prefer their data remain private.
  - cogman10 5y ago
    Other nations have more open laws about sharing medical data than the US. (I believe Iceland? Greenland? One of those island nations has genetic ancestry data for all citizens). AFAIK, the world hasn't ended and they aren't living in a dystopia because their medical information is so well documented. On the contrary it has served to stop the spread of genetic disorders and aid in medical research. Certainly I personally don't have these hangups about privacy. I think it's weird that society has created them. Pre-HIPAA that wasn't the case and it wasn't exactly seen as major breaches of privacy for doctors/nurses to talk relatively openly about diseases their patients had. The sanctimony of medical data is a recent development practically unique to the US. I'm not advocating that we broadcast to everyone details of every medical checkup. I am, however, saying that we shouldn't have nearly the level of restrictions we have around sharing medical information, particularly between medical institutions doing research.
- geoduck14 5y ago
  >I think it's a little crazy how worried everyone is about being identified through round about methods in medical data Do you realize that people were murdered because of their medical history? Like mental illness and ADD were reasons for killing people in America just a couple of decades ago? And currently, today there places where it is acceptable to drown your own babies if they demonstrate delayed development. Imagine your village elder coming to you and telling you that your baby needs to go in a bucket of water because he has club feet. That is happening. Today.
  - cogman10 5y ago
    > Like mental illness and ADD were reasons for killing people in America just a couple of decades ago? Citation needed. You realize a couple of decades ago was 2000, right? The closest I can think of what you might be talking about is the eugenics programs ran up to the early 1960s. Even so, those weren't executions, but rather sterilizations. Barbaric, but not murder. > And currently, today there places where it is acceptable to drown your own babies if they demonstrate delayed development. And what part of making health recorders more accessible would influence that one way or another? Do you think it's the fact that heath records are hard to access that protects us from parents murdering their children? How are other nations in the EU managing to not kill all their kids for defects!
- throwawaygh 5y ago
  > "I'd rather not have a future employer have an easy link to my social media information" So, to be clear, your right to post random ass thoughts on the internet under a pseudonym is sacred... but it's totally reasonable to RENEGE on EXISTING privacy agreements with real world actual existing real human patients about intimate health records? Just so long as we're clear about the enormous esteem you hold yourself in and the absolute contempt you have for others' privacy...

cogman10 5y ago

Frankly, putting up my name with my medical history has far less to do with having the two linked and far more to do with "I'd rather not have a future employer have an easy link to my social media information". Oh genetic disorders, you didn't ask about that earlier. My family is a carrier for cystic fibrosis. Is that something that's supposed to be super terrible to share? I'm not the GP, but frankly I think it's a little crazy how worried everyone is about being identified through round about methods in medical data. Google has a far better bead on exactly who I am than any doctor and, frankly, I'm far more worried about that advertising profile than I am about the "what if's" of my medical data being shared between hospitals and doctors (and potentially being leaked).

jjulius 5y ago
>... my name with my medical history... >My family... >... I'm far more worried about that advertising profile than I am about the "what if's" of my medical data... Again - yours. It's great that you're fine with your data being public, but as is evidenced by the way certain posts in this comment chain are being down/upvoted, clearly many other people share the opposite view and would prefer their data remain private.
- cogman10 5y ago
  Other nations have more open laws about sharing medical data than the US. (I believe Iceland? Greenland? One of those island nations has genetic ancestry data for all citizens). AFAIK, the world hasn't ended and they aren't living in a dystopia because their medical information is so well documented. On the contrary it has served to stop the spread of genetic disorders and aid in medical research. Certainly I personally don't have these hangups about privacy. I think it's weird that society has created them. Pre-HIPAA that wasn't the case and it wasn't exactly seen as major breaches of privacy for doctors/nurses to talk relatively openly about diseases their patients had. The sanctimony of medical data is a recent development practically unique to the US. I'm not advocating that we broadcast to everyone details of every medical checkup. I am, however, saying that we shouldn't have nearly the level of restrictions we have around sharing medical information, particularly between medical institutions doing research.
geoduck14 5y ago
>I think it's a little crazy how worried everyone is about being identified through round about methods in medical data Do you realize that people were murdered because of their medical history? Like mental illness and ADD were reasons for killing people in America just a couple of decades ago? And currently, today there places where it is acceptable to drown your own babies if they demonstrate delayed development. Imagine your village elder coming to you and telling you that your baby needs to go in a bucket of water because he has club feet. That is happening. Today.
- cogman10 5y ago
  > Like mental illness and ADD were reasons for killing people in America just a couple of decades ago? Citation needed. You realize a couple of decades ago was 2000, right? The closest I can think of what you might be talking about is the eugenics programs ran up to the early 1960s. Even so, those weren't executions, but rather sterilizations. Barbaric, but not murder. > And currently, today there places where it is acceptable to drown your own babies if they demonstrate delayed development. And what part of making health recorders more accessible would influence that one way or another? Do you think it's the fact that heath records are hard to access that protects us from parents murdering their children? How are other nations in the EU managing to not kill all their kids for defects!
throwawaygh 5y ago
> "I'd rather not have a future employer have an easy link to my social media information" So, to be clear, your right to post random ass thoughts on the internet under a pseudonym is sacred... but it's totally reasonable to RENEGE on EXISTING privacy agreements with real world actual existing real human patients about intimate health records? Just so long as we're clear about the enormous esteem you hold yourself in and the absolute contempt you have for others' privacy...