3 ms·
At some point there needs to be a comprehensive way to allow individuals to make decisions about how their data should be handled. Allow me to decide how my med
by worldsayshi 4y ago
At some point there needs to be a comprehensive way to allow individuals to make decisions about how their data should be handled. Allow me to decide how my medical records should be handled in the same way that I can manage whether my location data should be shared with the app I'm currently using. Allow me to revoke consent and set up general rules. Don't make me repeat myself unless there's a good reason. Make a system I can trust.
I think it could be done in the EU at least. If we up the it competence level of our decision makers a couple of notches.
- Semino 4y agoI hope not. It's time we start finding cures for illnesses like mine which doesn't has medication. It's time to use big data and ml on as much data possible to start helping much more people faster. Every CRT every diagnosis helps. Feel free to advocate for proper anonmysation if the data but not for the use of it.
- worldsayshi 4y agoI mean I agree and I think most people do. The background for my argument is a feeling that a lot of important research is held back because of privacy concerns. At least in Sweden it feels like decision makers err on the side of caution instead of allowing important research programs as you describe. But I've only seen one such case and maybe that one is very non representative. Who knows. My thought was that if we could just deal with privacy concerns in a comprehensive way we could open floodgates for research. But then again it might just as well add another layer of technocratic stagnation.