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Who gives a shit if Google has your medical records?
You can imagine how your medical record could be used against you, I'm sure? For people that have suffered agressions, addiction, mental issues, these are all private but can be used against an individual in the public sphere.
In Germany they decided to make the EPA (electronic medical record) opt-out starting by 2024. Managed by "gematik GmbH", a company with limited liability. Because why should the entity responsible for all medical records have some liability. It is a joke, a bad one. They don't even say how to opt-out.
I think it doesn't really matter in what form the government appears. It's still the government and so its rules apply.
Ultimately however the worst part of these laws is that they are so harmful to research in the long run. With easy and ready access to medical data we could be decades ahead of where we are today. There are legitimate concerns about health privacy (especially for women in the US) but the upside is just so much larger than the harms. It could be 10x less costly and time consuming to do both epidemiology and longitudinal intervention studies if we only had access to data. We could be directly tackling disease causal factors in ways that researchers today only dream of. It really is tens of thousands of lives lost each year that could have been saved if we could only have moved faster toward interventions.
I believe medical records should be open and laws should address how people use the data, not trying to make something so valuable to all humanity secret from the beginning. For example you can download my genetic code here: https://www.openhumans.org/member/iandanforth/
Who gives a shit if Google has your medical records?
We need a nuanced approach. Blanket bans, while sounding good, can slow down pace of innovation in an area that desperately needs more of it - esp as the world is aging. This needs to be a combination of informed consent, clear access auditing and usage, and laws to heavily penalize misuse of this data.
Earlier quoted context omitted.
> These laws, while well-intentioned, kill people. So does medical fraud, and it's not well-intentioned at all. Just sayin'. I have almost no faith at all in the types of folks that found and run tech companies, these days. They have proven, over, and over, and over again, that They. Just. Can't. Be. Trusted. If the tech industry were to create an ethics board, with real enforcement teeth (like the Bar Associations,…
So do guns
I strongly oppose this kind of law. HIPAA is a massive burden on medical and research organizations of all sizes, I've personally spent hundreds of hours navigating both human and technical bureaucracy related to HIPAA and I wouldn't wish that on my worst enemy. Ultimately however the worst part of these laws is that they are so harmful to research in the long run. With easy and ready access to medical data we could…
I don't think most people appreciate that medical research moves, at minimum, 20x slower than it would with open data access. Doing the simplest possible regression across two institutional datasets is a $100,000 project involving lawyers, de-identification, consents, and a host of bureaucracy. Since most projects end in null results, most don't happen. These laws, while well-intentioned, kill people. If you think th…
That goes both ways though. People are responding to hostage-taking actions by big tech and trying to protect themselves. There is a theoretical middle ground where data is available for research but not for abuse, but big tech typically won't allow that.
Who gives a shit if Google has your medical records?
Anyone with a desire for privacy who possesses critical reasoning.
Here's a simple example of what can happen with your medical data: Medical data ends up somewhere like LexisNexis -> Company looks you up before hiring -> Company sees that you have a health condition that will cost them more in health insurance costs -> Company doesn't hire you because "it's not a culture fit".
Oh, you don't have a health condition right now? Well, pray you never develop one either -- your boss will probably be able to sign up for push notifications for when there's a new diagnosis for you.