I’m curious, are you worried that if everyone in your position doesn’t share data there will never be research on your condition and therefore no cures or better treatments?
I worry that one tradeoff of more privacy and less trust is that researchers won’t get the information they need to produce cures and treatments. It’s a faustian bargain that people who are sick have to either risk having their information leak, or risk science ignoring their condition entirely.
> I’m curious, are you worried that if everyone in your position doesn’t share data there will never be research on your condition and therefore no cures or better treatments?
You have data sharers to blame for that. They're the ones that are destroying possible cooperation (everyone with that condition sharing data).
> It’s a faustian bargain that people who are sick have to either risk having their information leak, or risk science ignoring their condition entirely.
Indeed, and I think the way to solve it is to go after the leakers and the sharers and the "entrepreneurs". If I give my data for medical research, I mean bona fide research, as in scientists and labs and tax-funded scientific papers, and not "research" into lowering operational costs by selling data, or "research" done by startups partnering with the clinic.
I worry that one tradeoff of more privacy and less trust is that researchers won’t get the information they need to produce cures and treatments. It’s a faustian bargain that people who are sick have to either risk having their information leak, or risk science ignoring their condition entirely.