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This has convinced me to get off Facebook for good.

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YadaYadaYada

Super_Ideal_Rock
Premium
Joined
Feb 2, 2016
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StephanieLynn said:
This is disturbing on so many levels, and MAYBE they didn't get the information now but that doesn't mean they won't try to do this again. I've read that obtaining medical records in the name of research is not a HIPPA violation.

https://www.google.com/amp/s/www.fo...-shows-it-just-doesnt-understand-consent/amp/

Have you done a 180 on having a FB profile with the latest developments?
Click to expand...

I do not have and have never had a Facebook account. However, from what I have read, Facebook allowed Cambridge Analytica to gather up information of "friends" of people who took quizzes just because their names were available. If Stanford University will release medical records to Facebook just because Facebook says that it has the names in its client base, without proof of those people's consent to allow their medical records to be released, Facebook can just use a phone book to get names. Closing an account won't protect you. It can add my name even though I never had an account. It is up to Stanford University and other medical facilities not to divulge personal medical data.

This just keeps getting worse and worse.

AGBF
 
I know, very disturbing. You were smart to never get on the FB train @AGBF!
 
The hospitals agreed to release this information?? That's surprising (and horrifying).
 
The thing that bugs me (besides this thing) is that Facebook treated me like item to be sold, yes it was free so therefore they had to make money, but in retrospect I think charging would have been better, nominal and it would have kept fake accounts out, people who didn't pay could get closed down. My information is not for sale, altho most of my info is already in other spots, once it's there it's there. Sites have to make money to stay in business I know, but there must be a better way than this.
 
@Tekate, I question whether it's even worth it at this point to leave FB because after ten years they probably have all the information they want. I personally never realized there was a price to this social networking, pretty ignorant really, nothing is ever free after all.

Hopefully a lot of people leave although I read an article this morning that over a billion people would have to leave for FB to feel any effect, that is disheartening to say the least. Being forthright goes a long way with people, if they simply were transparent that would have made all the difference but these data scandals leave people with a sick uneasy feeling. What else have they done that we don't yet know? This is just the tip of the iceberg.
 
StephanieLynn said:
@Tekate

I question whether it's even worth it at this point to leave FB because after ten years they probably have all the information they want.
Click to expand...

For the egregious abuse you just mentioned, StephanieLynn, the wholesale gift of one's medical records by some large university that has apparently amassed them (to anyone the university wishes to sell them) all the university needs is one's name.

Facebook can say it has your name whether or not you are (or were) actually a client. They can say that I was or am a client and get my name off a mailing list for catalogues for dog products or something else I am on. Although I never had a Facebook account. If consent isn't needed, Facebook can claim anyone is a client. Basically that is what they did with Cambridge Analytica.

Lack of consent is the problem.

Deb :wavey:
 
@AGBF, you're right about the lack of consent, there should be some sort of oversight with Facebook now but I doubt there will be. Facebook also owns Instagram which is extremely popular (especially with the younger generation so I would expect there will be some data sharing concerns with their other companies as well.
 
Thank you for posting this @StephanieLynn . Unfortunately all I can say is WOW.

It makes me glad I’ve never posted anything on line other than Pricescope. I would think the hospital releasing information would be a violatïon of Hippa laws. You are so correct @AGBF about things getting worse and worse.
 
Unfortunately, I think if your u have EVER been on Facebook they can have access the your records. I don’t think you are ever really deleted.
 
As long as you use Internet, it is all the same. Example? I am playing Solitaire and from time to time I get popups - from the sites I buy from, or even some insurance companies.

It is some Solitaire, for god's sake! A mindless card-sorting game. I also downloaded "feed the cats", for my son, afraid what the cats might find about us now...
 
I never used Facebook either. For multiple reasons.

I once had a technology professor who said - if the service is free, the product is you.

I am not okay with a healthcare provider sharing my personally identifiable healthcare data without consent.

BTW, I have avoided genetic testing services (eg: 23 and me, etc), because I'm not confident about how my data might be used.

Anne
 
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Restrictions have to be placed on anyone who keeps medical records. It is they, not Facebook, who have the personal data that makes people most vulnerable. It is why HIPAA laws were enacted. I do not know how facilities got around confidentiality regulations in order to release data without consent (or the knowledge of he medical record owners) when the alleged purpose of the release was "for research". This has to be the object of legislative remedy. HIPAA has to be strengthened if there is a loophole via which medical data can flow unfettered to any paying user without a patient's consent.
 
I find FB helpful for a number of reasons. I use it and make it work for me. I don’t have any medical records on FB and have other security measures in place ie frozen credit for one and other security measures etc as one is being assaulted from many venues not just FB. Yes what they have done are doing is egregious but the fact remains for some/many of us the good outweighs the bad. For now at least.

And yes to what @AGBF wrote. HIPPA regulations are strict. Not sure what went down there with FB and medical info. But I’m guessing if one shares it on FB it’s like giving permission to share that info. Just hypothesizing.


Rightly or wrongly I realize anything I share may be used against me. And then if I share or not that’s up to me.
 
@missy, the way I understand it, this was not a matter of people sharing medical information on social media. Rather it was Facebook using a doctor to obtain medical records to try to match them to user profiles for "research".

I get that if you put it out there it becomes public knowledge but when you don't intentionally do that and you find out FB even considered obtaining this information without consent or disclosure to users, that is extremely disturbing. For me,and I imagine some others, that alone negates any benefit to social media.
 
StephanieLynn said:
@missy, the way I understand it, this was not a matter of people sharing medical information on social media. Rather it was Facebook using a doctor to obtain medical records to try to match them to user profiles for "research".

I get that if you put it out there it becomes public knowledge but when you don't intentionally do that and you find out FB even considered obtaining this information without consent or disclosure to users, that is extremely disturbing. For me,and I imagine some others, that alone negates any benefit to social media.
Click to expand...

I agree Stephanie. Disturbing indeed. I can’t imagine that’s ethical or even legal but I do not have enough info. Will definitely watch this issue with interest.
 
It sounded to me as if a Stanford University had amassed medical records and because Facebook claimed to have names of "clients", the university (Stanford) planned to use the records (obtained the Lord only knows how from many sources) for research and that this is legal and protected by Hippa since its purpose is "research".

We all know that our medical information flows freely through all kinds of channels for so-called "insurance" purposes. A large university with a computer might easily be able to grab the data if it were unprotected by law. As I have said before on Pricescope, when i was growing up there was one nurse/secretary and one or two doctors in my doctor's office. now there s one doctor and four "secretaries" to handle all the insurance forms. An aide of some sort probably takes one's vital signs so that the doctor can spend his alloted 15 minutes with the atient and not waste time. The insurance company has all the information and it is all registered and computerized. There is no confidentiality.

Congress has to stop the sale of our medical records for "research" without our consent. Hippa should prevent this.
 
This was in the talking stages, and I don't know how far they got in the planning or talking stage. Hipaa does protect your medical record, with some exceptions. The primary exception is for of course, delivering your healthcare and for billing purposes. If someone wants to do research on patients, for example if they want to see if there is enough of a population sample of a particular disease or eligibility requirements, to do research, or if they need to do pre-screening before approaching a potential participant, one needs to open a study at an accrediated research organization and complete paperwork to approve the study, and ask and obtain a waiver of hippaa authorization. It is granted if you can fulfill a whole list of requirements. Another exception for collecting data, and that is for marketing or consumer research. HOWEVER, that is the kind of situation where you set up something like a table in a public area and have people try food samples, or you go to a park and count heads, things that like. The data that Facebook is obtaining can never be considered to be completely anonymized, if they had a) a list of anonymized patient data, and b) a second list of actual names, because potentially, those two lists could be linked at some point. That is not allowed, and I don't see how anything like that could pass an IRB. At most they could share anonymous aggregate data, not broken down by person.
 
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