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I think US law has it backward, and health data should be publicly accessible by default, and very easy to share with researchers. I care so much more about sol

I think US law has it backward, and health data should be publicly accessible by default, and very easy to share with researchers. I care so much more about solving diseases and reducing costs than I do privacy. I think people underestimate the costs of privacy on both. Unwanted effects (like discriminating based on data) can be legislated separately. Once we are all effectively immortal, I think we can loop back around to the privacy thing. I did 23and Me years ago hoping my data would be used for research. I feel that privacy absolutists dominate the narrative, but given the choice of privacy, cost, and effective medicine…how many people really would choose privacy?

RyanAdamas 3y ago
>Once we're all effectively immortal This is the lie sold to every generation's wealthy and powerful. The idea that our tech now is better than before and we're all going to live forever. I don't disagree that health data should be public, but so should all medical procedures and prescriptions. They should be covered by single-payer, too. That way no one has to worry about their ailments, but are also accountable to everyone else for the services they use and demand. The idea we're going to live a lot longer than other generations is a common one among those beginning to lose their youth who spend too much time in the science-will-save-us narrative.
kjkjadksj 3y ago
Other countries like Iceland have excellent genomics projects in comparison. 2/3 of Icelandic adults are sequenced and these are made available to researchers. They have represented a very important control population for medical genomics for example, among many other excellent projects. https://en.wikipedia.org/wiki/DeCODE_genetics https://en.wikipedia.org/wiki/DeCODE_genetics
- galleywest200 3y ago
  Iceland does this so that they do not produce offspring with someone too closely related to them.

RyanAdamas 3y ago

>Once we're all effectively immortal This is the lie sold to every generation's wealthy and powerful. The idea that our tech now is better than before and we're all going to live forever. I don't disagree that health data should be public, but so should all medical procedures and prescriptions. They should be covered by single-payer, too. That way no one has to worry about their ailments, but are also accountable to everyone else for the services they use and demand. The idea we're going to live a lot longer than other generations is a common one among those beginning to lose their youth who spend too much time in the science-will-save-us narrative.

kjkjadksj 3y ago

Other countries like Iceland have excellent genomics projects in comparison. 2/3 of Icelandic adults are sequenced and these are made available to researchers. They have represented a very important control population for medical genomics for example, among many other excellent projects. https://en.wikipedia.org/wiki/DeCODE_genetics https://en.wikipedia.org/wiki/DeCODE_genetics

galleywest200 3y ago
Iceland does this so that they do not produce offspring with someone too closely related to them.