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Do no harm petition: Don't give big tech access to our medical records

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Re: Do no harm petition: Don't give big tech access to our medical records

#111

Post by maxehmookau »

michaelmior wrote: post #79
maxehmookau wrote: post #31

Earlier quoted context omitted.

> HIPAA is a massive burden on medical and research organizations of all sizes That is the point. It is supposed to be burdensome. It is supposed to be difficult and cumbersome to do anything with anybody's medical data. I don't want to dismiss your comment entirely, because I understand the frustration around the good that the data could do but in the wrong hands it could be truly disasterous. I do not want Meta or…

> It should be easier for people to opt-in to sharing their medical data This seems like a good compromise moving forward. Add a section on whatever HIPAA forms you already need to sign that gives you the chance to opt in to use of anonymized data for medical research purposes. I think for this to work, the law would need to clearly define how records must be anonymized, and provide penalties both for poor anonymizat…

Yep. I'm all for a better version of informed consent.

"Can we provide your medical details in full to the following organisations?" "Can we provide an anonymised version of your record to them?"

Yes. No.

Abide by those wishes. It's pretty simple.

Unfortunately big tech companies see the fines for handling data poorly as a cost of doing business, and not the punishment it was designed as. Until that changes, the status quo can't change.

Re: Do no harm petition: Don't give big tech access to our medical records

#112

Post by jillesvangurp »

Calvin02 wrote: post #9

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.

Everybody wants privacy. But they also want treatment for whatever ails them. These things don't have to be mutually exclusive.

Lack of information is a big challenge for doctors. When I say challenge, I mean people are dying needlessly because of their doctors don't have access to critical information and this leads to bad decision making.

Here in Germany doctors are completely in the dark. Even basic information like who I am or where people live isn't being shared. Because privacy. Every doctor you talk to first needs to take down all your basic details. Address, date of birth, etc. Every medical appointment is ground hog day. They know nothing of you, your personal details, or your medical history. And German GPs don't do a lot themselves. You get referred for even the most basic things but without them sharing information. So, all the obvious things happen on a daily basis. People receiving the wrong medications. Doctors not acting because they are unaware of the history of the person in front of them. Or wasting time on diagnosing things that have already been diagnosed. Or mis-diagnosing those things.

That's the consequence of bad data.

The standard German sentiment against any digital is "I don't like this". But the consequences are that they have to suffer bad health care, a stupendously inefficient system that they pay for through really expensive insurance every month, and preventable deaths because essential data isn't being exchanged to those who need it.

And their privacy sucks anyway, because IT security is about what you expect from a sector running on ancient hardware and software. IT incompetence/ignorance is the norm. Quite a contrast with other countries I've lived in.

Re: Do no harm petition: Don't give big tech access to our medical records

#113

Post by JohnFen »

cloverich wrote: post #96
freeone3000 wrote: post #33

Earlier quoted context omitted.

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…

> Very many things doctors need to be aware of to diagnose conditions have significant social stigma... the risk is too great for any individual Very many things doctors need to be aware of, because the patients life depends on it, are left out when patients move between specialists and physicians, which happens all of the time. Outbreaks of viral and bacterial illnesses result in thousands of people independently ch…

> We shouldn't pretend HIPPA is a good thing, or the current system is doing a good job.

Honestly, my problem with HIPAA is that it's not really adequate. There are too many loopholes in it. I'd like to see it strengthened quite a lot.

> much more open and connected medical records is certainly a part of that transformation.

As long as the patients those records are about are in full control over their disclosure and use.

Re: Do no harm petition: Don't give big tech access to our medical records

#114

Post by nmca »

yomlica8 wrote: post #97
iandanforth wrote: post #37

Earlier quoted context omitted.

[flagged]

People will die as a result of their medical privacy being stripped away, when they forgo care in fear of the effect that stigma has or fear of losing their job due to their medical needs being to expensive or being prosecuted from having a miscarriage or drug use, etc.

sure but to engage in the relevant consequentialist reasoning correct you need to argue that this is more people, not just some people

(I'm undecided on the whole thing but this argument as stated is bad)

Re: Do no harm petition: Don't give big tech access to our medical records

#115

Post by genocidicbunny »

ryandrake wrote: post #108
genocidicbunny wrote: post #101

Earlier quoted context omitted.

> how many people will have access, for how long And more importantly, _who_ the people are. Yeah, I want full legal names. I want someone to name in a lawsuit if things go wrong or my data is leaked. I want personal legal culpability from everyone interacting with that data.

I mean, I’d be for this but I was trying to meet OP half way. CONSENT. That’s all that we are asking for.

> but I was trying to meet OP half way.

I'm not. Getting pretty tired of having the meeting point of getting buttfucked and not buttfucked being buttfucked, but with lube.

Re: Do no harm petition: Don't give big tech access to our medical records

#116

Post by JohnFen »

iandanforth wrote: post #37
freeone3000 wrote: post #33

Earlier quoted context omitted.

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…

[flagged]

It's not as black and white as that. People also have died because of the abuse of medical data. There is real, genuine harm either way.

And I'm not saying I wouldn't be willing to share. I have consented to such things before. But it should be my decision how much risk I'm willing to shoulder.

Re: Do no harm petition: Don't give big tech access to our medical records

#117

Post by dudeinhawaii »

Big Tech, Small Tech, someone will eventually have access to our medical records and honestly it's the direction things need to go in order to have cheaper, more transparent healthcare as well as drive innovation in the space a large.

It's less about "who" and more about "how". How will we grant this access in safe and (preferably) anonymous ways.

Re: Do no harm petition: Don't give big tech access to our medical records

#118

Post by phyllistine »

scarby2 wrote: post #56
genocidicbunny wrote: post #24

Earlier quoted context omitted.

Give me a surefire, 100% guarantee that my data won't be misused against me or anyone else, under severe penalty to you personally if your guarantee fails. Then we can talk.

i cant give you that guarantee today. I can't guarantee the government or your healthcare provider isn't misusing your data. In fact a surefire guarantee essentially doesn't exist. But what exactly are you afraid of? How does someone weaponize your information? Everyone in my life already knows about my health conditions, i speak openly about them in my personal life, my business life and online there have been zero…

> How does someone weaponize your information? Increase your health insurance prices based on more detailed knowledge of conditions? Deny you health insurance entirely?

Re: Do no harm petition: Don't give big tech access to our medical records

#119

Post by delfinom »

dmbche wrote: post #72
iandanforth wrote: post #61

Earlier quoted context omitted.

I reject the framing. It's about responsibility vs selfishness and fear. Medical information is a byproduct of something you do anyway that can save lives . It is our responsibility to make it available. If you want to opt out, fine, but basic decency demands that as a society we get over our collective hangups and make this information available.

Are you a researcher? I find it alarming to hear this kind of talk, especially after so many have raised the very serious issues that can arise from this being public. It is not our responsibility to make this public. Your logic is similar to the gov trying to get access to all exchanges over the web to scrape them for terrorism and violent behavior. Maybe take a step back and think about the harms that would come ou…

There's a group of individuals that have been lobbying the US government that if we got rid of HIPPA, then we could cure every disease on the planet with all that medical data they could now harvest.

Re: Do no harm petition: Don't give big tech access to our medical records

#120

Post by rakoo »

scarby2 wrote: post #56
genocidicbunny wrote: post #24

Earlier quoted context omitted.

Give me a surefire, 100% guarantee that my data won't be misused against me or anyone else, under severe penalty to you personally if your guarantee fails. Then we can talk.

i cant give you that guarantee today. I can't guarantee the government or your healthcare provider isn't misusing your data. In fact a surefire guarantee essentially doesn't exist. But what exactly are you afraid of? How does someone weaponize your information? Everyone in my life already knows about my health conditions, i speak openly about them in my personal life, my business life and online there have been zero…

> How does someone weaponize your information

Show baby diapers ads because Google knows I'm pregnant. Increase the price of baby furnitures because Amazon knows I'm pregnant. Decline a job interview because LinkedIn knows I'm alcoholic. Tell me what parties I might be interested in because Facebook knows I have cancer. Refuse a ride because Uber knows I'm not vaccinated.

None of this situations is far fetched, and none of those situations is something positive.

Companies only care about profits, not the betterment of society as you seem to believe. I am very happy there is no way for them to know more than they need about my private life.

> my business life and online there have been zero consequences to this.

because those laws were in place. Do you believe companies have been behaving nicely because they care about you ?

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