Who gives a shit if Google has your medical records?
I do. I give a shit about any data any tech company has about me, and a thousands times more shits when it's very sensitive data such as medical records.
Do no harm petition: Don't give big tech access to our medical records
41–50 of 231 posts
Re: Do no harm petition: Don't give big tech access to our medical records
#42I 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…
Right after we make all medical treatments not-for-profit and all medical research completely open.
Re: Do no harm petition: Don't give big tech access to our medical records
#43I 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…
> upside is just so much larger than the harms Or more importantly, the harms are to me, and the upsides are to you, so who cares?
You're correct in pointing out that people are inherently selfish, however one major purpose of collective government is to do those things which are necessary and not always in-line with selfish motivations. Just as most Americans would be horrified to have their salary posted publicly for fear of stigma, jealousy, reprisals etc, Norway has demonstrated that those fears are unfounded, and salary data doesn't even have the opportunity to save thousands and thousands of lives.
Re: Do no harm petition: Don't give big tech access to our medical records
#44As long as PII is not attached to medical metadata I really don’t understand the pettiness of these laws
They're not petty, they're trying to address a genuine problem. First, the legal definition of "PII" excludes quite a lot of acutal PII. Second, even if there's genuinely no PII attached, it's pretty trivial to reidentify the data.
Re: Do no harm petition: Don't give big tech access to our medical records
#45I 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…
Doctor-patient confidentiality is important so that the doctor can act in your best interest (yes, yes, very funny) with full information. Very many things doctors need to be aware of to diagnose conditions have significant social stigma. Examples include alcoholism, mental disorders, substance abuse, genital status, sexual status, pregnancy status, the list goes on. The average person is reluctant to share this info…
> many things doctors need to be aware of to diagnose conditions have significant social stigma
some are illegal - think threating drug overdose
Re: Do no harm petition: Don't give big tech access to our medical records
#46I 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…
> 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,…
I agree. It's hard for me to get excited about anything tech companies output nowadays as more than likely it will be surveillance, ad, upsell and subscription-driven with growth and profits triumphing any regards and respect for the end-user experience and privacy. I have zero reason to trust them not to abuse my health data for their own interests rather than use it for the greater good.
Re: Do no harm petition: Don't give big tech access to our medical records
#47Earlier quoted context omitted.
"google" is made of many individuals. If "google" has your records, you don't know who has access to them - they effectively become "public knowledge" in a way. 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.
I trust Google's internal user data access controls infinitely more than I do a random hospital's.
It's not a random hospital - it's your hospital. There are many governmental bodies that are there only to watch Hipaa violations, and if your data is used wrongly you can sue for damages.
Google is a private company with no oversight.
Re: Do no harm petition: Don't give big tech access to our medical records
#48I 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 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.
I believe exactly that about not medical records but medical procedures. If the doctors force me to share my medical records with the world of spammers and scammers I would rather choose to be a doctor for myself. But I see a little bit of problem when medical books are hard to download and medical drugs are very expensive because of so-called intellectual property. Medical industry relies too much on just obeying to all the doctor tells to do, blindly and brainlessly.
Do you really believe that my medical records bond to my personal data are more important knowledge to society than how to do drugs which can save anybody?
Re: Do no harm petition: Don't give big tech access to our medical records
#49In 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.
> GmbH
This is apparently the German equivalent to an LLC.
Pretty sure you misunderstood what "limited liability" means. Pretty much all organizations today have the same legal status: https://en.m.wikipedia.org/wiki/Limited_liability
Re: Do no harm petition: Don't give big tech access to our medical records
#50I 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…
> upside is just so much larger than the harms Or more importantly, the harms are to me, and the upsides are to you, so who cares?
You don’t think you benefit from medical research?