4 ms·

I wish there was a way to explicitly consent for all my health data to be free and public for any purpose.

intopieces 9y ago
Be careful what you wish for. Making such information free and public could open you up to all kinds of tracking and discrimination, not to mention higher costs for insurance or credit. Anonymize it and I'm there, though this certainly would not help in this situation described by this article.
- lettergram 9y ago
  Don't forget, they just ruined any opportunity for their children to also have a anonymous genome. Literally, if there is some hereditary disease, they may have just made it so their kids can never get affordable insurance -_-
  - Houshalter 9y ago
    It's been illegal for awhile for health insurance companies to use genetic information. And now they can't even discriminate against any preexisting conditions.
    - intopieces 9y ago
      But how would you know if they had? My insurance bill doesn't give me a breakdown of how they decided my premium. And how do you know that they won't be able to in the future? Healthcare regulations are subject to the whims of the current government.
    - kelnos 9y ago
      For now: the final ACA replacement bill isn't quite ready for a vote. The final language may end up allowing for discrimination against preexisting conditions. It's not unreasonable to suggest that laws protecting against use of genetic information could get repealed someday either.
toomuchtodo 9y ago
http://www.personalgenomes.org/harvard/sign-up http://www.personalgenomes.org/harvard/sign-up Disclaimer: I am a participant; my genome and health records are public.
- chopin 9y ago
  Congratulations, you published the genome of all your relatives. Did they consent?
  - toomuchtodo 9y ago
    My genome is mine. While I'm aware of the negative consequences sharing my genome causes others sharing large portions with me, the benefits outweigh the negative consequences.
    - mike-cardwell 9y ago
      So they didn't consent?
      - toomuchtodo 9y ago
        I don't require any other consent, legally or moraly, besides my own.
        lettergram 9y ago
        Although I agree we all have our own moral code, and you literally don't need anyone's consent to do anything. The consequences of your actions can be far reaching and perhaps some future version of yourself can come to terms with the fact - it is likely immoral by your future code of ethics, to give out personal data on your family members without their consent. You can't change giving out data, while your morals can change. That is why being conservative with your data is beneficial. Your future self may change their mind.
        eveningcoffee 9y ago

Be careful what you wish for. Making such information free and public could open you up to all kinds of tracking and discrimination, not to mention higher costs for insurance or credit. Anonymize it and I'm there, though this certainly would not help in this situation described by this article.

lettergram 9y ago
Don't forget, they just ruined any opportunity for their children to also have a anonymous genome. Literally, if there is some hereditary disease, they may have just made it so their kids can never get affordable insurance -_-
- Houshalter 9y ago
  It's been illegal for awhile for health insurance companies to use genetic information. And now they can't even discriminate against any preexisting conditions.
  - intopieces 9y ago
    But how would you know if they had? My insurance bill doesn't give me a breakdown of how they decided my premium. And how do you know that they won't be able to in the future? Healthcare regulations are subject to the whims of the current government.
  - kelnos 9y ago
    For now: the final ACA replacement bill isn't quite ready for a vote. The final language may end up allowing for discrimination against preexisting conditions. It's not unreasonable to suggest that laws protecting against use of genetic information could get repealed someday either.

toomuchtodo 9y ago

http://www.personalgenomes.org/harvard/sign-up http://www.personalgenomes.org/harvard/sign-up Disclaimer: I am a participant; my genome and health records are public.

chopin 9y ago
Congratulations, you published the genome of all your relatives. Did they consent?
- toomuchtodo 9y ago
  My genome is mine. While I'm aware of the negative consequences sharing my genome causes others sharing large portions with me, the benefits outweigh the negative consequences.
  - mike-cardwell 9y ago
    So they didn't consent?
    - toomuchtodo 9y ago
      I don't require any other consent, legally or moraly, besides my own.
      - lettergram 9y ago
        Although I agree we all have our own moral code, and you literally don't need anyone's consent to do anything. The consequences of your actions can be far reaching and perhaps some future version of yourself can come to terms with the fact - it is likely immoral by your future code of ethics, to give out personal data on your family members without their consent. You can't change giving out data, while your morals can change. That is why being conservative with your data is beneficial. Your future self may change their mind.
      - eveningcoffee 9y ago