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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

#101

Post by genocidicbunny »

ryandrake wrote: post #78
JohnFen wrote: post #35

Earlier quoted context omitted.

I understand your perspective, and respectfully disagree. The reason HIPAA exists is because of a long history of the abuse of people's medical records. Companies should not have access to my records without my explicit informed consent. They have shown time and time again that they can't be trusted with sensitive data. That's at least equally true for tech companies.

I'd be OK with a system that gave researchers access to my medical history only if they obtained actual, informed, and un-coerced consent . No "In order to use this medical service you must consent...", no "Please click Agree on this 38-page terms of service (which also sneakily agrees to consent)". No "I provide consent to each and every so-called researcher who wants access to my health history." An actual written…

> 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.

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

#102

Post by hedora »

iandanforth wrote: post #61
dmbche wrote: post #18

Earlier quoted context omitted.

What are your thought on privacy then? Shouldn't my records be my own business?

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.

Blaming individuals for not trusting medical and tech companies that have repeatedly abused private information is a strange take.

Instead of taking the information by force (which health care conditioned on opt in certainly is), we should figure out how to build a trustworthy medical research and care industry.

For instance: They could only make this information available to universities, and ensure the results of the research were public domain.

Or, they could create separation of concerns for companies involved. If google wants to store medical data, then they have to spin off their ad business.

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

#103

Post by hideo »

Nifty3929 wrote: post #84
ClumsyPilot wrote: post #60

Earlier quoted context omitted.

> Pretty much all organizations today have the same legal status Thats exactly the issue

Limited Liability is a GREAT thing. It allows us to build businesses that serve society that we wouldn't otherwise. Would you start a company or invest in one if you could lose all your personal wealth? Few would.

You're missing GPs point. GP is not arguing to remove the concept of LLCs.

GP is arguing that the entity in charge of all your medical information should not be an LLC. LLCs in general are great.

This company probably shouldn't be LLC.

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

#104

Post by iandanforth »

tgv wrote: post #86
iandanforth wrote: post #13

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…

> With easy and ready access to medical data we could be decades ahead of where we are today. That's just bullshit. Also, given the state of medical research methodology, you could just as well argue that it would yield even more unreliable studies, each adding confusion to our knowledge.

I get where you're coming from but the problems are orthogonal.

Let's say that each research study spends 10% of its time on recruitment and another 5-10% of its time on compliance. (Real numbers can be much higher).

Open medical data would reduce both these efforts, so every study, regardless of quality now goes more quickly and/or is less expensive. This is the primary benefit.

Now you're pointing out that extremely open data can lead to rapid and perhaps erroneous analysis. This is true, but it would also lead to rapid and accurate analysis. My point is that everything speeds up and compliance regulations around data handling are far less impactful on study quality than are protocols around experiment design.

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

#105

Post by mdale »

genocidicbunny wrote: post #20
jnsie wrote: post #10

Earlier quoted context omitted.

Anyone with a desire for privacy who possesses critical reasoning.

Seriously, this question seems to indicate a critical lack of common sense in the poster. You don't even need to have a desire for privacy, just a modicum of risk aversion. 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 c…

There are already real bias actualized on the name and gender of the applicant at the very first stage of company hiring. Late stage investigations credit reports, public court records, online social profiles can happen but rarely do. Companies focus on referrals and confirmed job history. I can't imagine more invasive investigations into health history. Secondly why are companies paying more for healthcare given a employee sickness. The point of insurance is that it normalize cost across the entire pool of people and must be regulated to not be prejudice of pre existing conditions.

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

#106

Post by JohnFen »

ryandrake wrote: post #78
JohnFen wrote: post #35

Earlier quoted context omitted.

I understand your perspective, and respectfully disagree. The reason HIPAA exists is because of a long history of the abuse of people's medical records. Companies should not have access to my records without my explicit informed consent. They have shown time and time again that they can't be trusted with sensitive data. That's at least equally true for tech companies.

I'd be OK with a system that gave researchers access to my medical history only if they obtained actual, informed, and un-coerced consent . No "In order to use this medical service you must consent...", no "Please click Agree on this 38-page terms of service (which also sneakily agrees to consent)". No "I provide consent to each and every so-called researcher who wants access to my health history." An actual written…

Yes, I agree entirely. If it's been coerced in any way, or if any aspect is not fully disclosed in a way that I can understand, then it is not "informed consent".

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

#107

Post by maxehmookau »

scarby2 wrote: post #76
maxehmookau wrote: post #39

Earlier quoted context omitted.

No, I meant the company. I'm in the UK and if it transpired that Google (the company) had routine access to NHS medical data, I'd be very upset and complaining to the information commissioners office.

interestingly health data is a huge problem in the UK. In that the NHS trusts have extremely valuable information on a population wide basis and do next to nothing with it. Does google/a private company have to do it? No, but at a minimum the UK govt needs to make significantly better use of this data for research purposes. a 100x increase in medical research spending and a new more agile public medical research body…

Sure, that's fine.

The UK govt has proven that when it tries, it can do digital services _pretty well_.

The concern here isn't the government using the data for the betterment of society, it's the government handing over health data wholesale to companies whose sole purpose is to generate profit by exploiting data.

Ask for consent. If I say you can't use my medical data, then you can't use it.

If I say you can, then you can.

It's really very simple.

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

#108

Post by ryandrake »

genocidicbunny wrote: post #101
ryandrake wrote: post #78

Earlier quoted context omitted.

I'd be OK with a system that gave researchers access to my medical history only if they obtained actual, informed, and un-coerced consent . No "In order to use this medical service you must consent...", no "Please click Agree on this 38-page terms of service (which also sneakily agrees to consent)". No "I provide consent to each and every so-called researcher who wants access to my health history." An actual written…

> 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.

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

#109

Post by rocket_surgeron »

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]

You are probably like me. To me there is no medical information of any kind that could embarrass or "stigmatize" me or anyone else.

But the vast majority of people are paralyzed by fear that someone might find out they have hemorrhoids.

Others live in a delusional state of paranoia where "duh gubmint" will use the info against them not realizing that any entity, governmental or otherwise, willing to do so will just ignore privacy laws anyways.

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

#110

Post by hedora »

arp242 wrote: post #88
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.

I don't mind aggregate data, or anonymized where I'm "Patient b15-2gty", which is what you seem to be talking about, but I do mind "here's all the data about patient Martin Tournoij, for everyone to read". I wouldn't want any future employers to see my medical data for example, as they may use this to discriminate (theoretically anyway; my medical history thus far is essentially non-existent). Also: in the late 90s m…

Mapping “Patient b15-2gty” back to your real name has been trivial for decades.

My first job involved a one hour lecture about how people had repeatedly accidentally deanonymized and accidentally leaked data at other institutions, leading to divorces and worse.

We had somewhere between 10 to 100 bytes of entropy on each patient, and it would have been enough for any of their acquaintances to map back to real names and also severely violate privacy.

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