back to article Facebook tried to access and match medical data – report

You’d think recent events might have dulled Facebook’s rapacious lust for data. But now comes news, from CNBC, that The Social Network™ tried to acquire access to patients’ medical records. The network’s report says Facebook approached “several major U.S. hospitals to share anonymized data about their patients, such as …

Anonymous Coward

All part of the 'Shadow Profile' Economy

This medical slurp is just part of wider use of data-brokers to get more and more Offline data and pair it with Online profiles. We know from other EU Data Protection bodies (not the Irish-DPC they're complicit), that Facebook tracks everybody. Any visitor to a website that shares data with Facebook or hosts a Facebook-like button, plus all the info from Data Brokers from Experian to Acxiom. This happens even if you're not a Facebook user, or have closed out your account #DeleteFacebook.

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So how are ex-users / non-users of Facebook supposed to Opt-Out?

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There's no way! Everyone is being tokenized all the time, and that activity is then tracked / traded / shared and leaked! Its this 'Shadow Profile' economy that's most disturbing and creepy, and deserving of extra scrutiny.

Next week when the CEO of Facebook appears in Washington, I fear this is all going to be lost on them. With Zuckerberg controlling the discussion points (weaponizing the narrative as they say), this will all get lost in translation. No doubt Zuckerberg will promise fixes and changes to Facebook, but how is any of that going to fix 'Shadow Profiles' and merging of offline / online data from 3rd-Parties etc!

Only now after the Facebook/Android message slurp revelations, are users waking up to the fact that its often their low-hanging-fruit friends / colleagues / family, that are ratting them out to giants like Facebook (by either being naive and sharing too much or not understanding how the process works).

......'We are the native people's now'......

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Anonymous Coward

BTW: Anonymized data is a 'fake news' story as confirmed here:

https://www.digitaltrends.com/computing/how-do-advertisers-track-you-online-we-found-out/

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Re: All part of the 'Shadow Profile' Economy

Next week when the CEO of Facebook appears in Washington, I fear this is all going to be lost on them.

For most, yes. For a few Senators, no. Wyden has a pretty good grip on things if Zuck is in front of his committee.

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Anonymous Coward

Re: All part of the 'Shadow Profile' Economy

but how is any of that going to fix 'Shadow Profiles' and merging of offline / online data from 3rd-Parties etc!

It will not. There is only one TECHNICAL fix and any LEGISLATIVE fix will be worked around technically unless the proper technical fix is in place as well. The TECHNICAL fix is complete, full and unconditional de-anonymization of the internet. Before you grab the torch and the pitchfork finish reading please. Deanonymization should be combined with mandating that ANY piece of personal data is digitally signed by its rightful owner (the originating entity) along with the circumstances when it was granted. Owning even a single piece of data without proper consent demonstrated by a signature should be punishable by 10% global turnover.

Why deanonymization - because the method for building shadow profiles is exactly this - deanonymization via statistics. That is being done already and the internet is already not anonymous. We are being tracked 24x7 and any anonymization can be removed completely in 30 minutes by serving a court order on any of the trackers. They will happily provide your full shadow profile including name, address, post code, sexual orientation, web browsing history, shopping history, etc.

As long as there is pretense of anonymity, there is no way of fighting this. It will be there. One way or another.

So the only way is to stop the anonymity (which does not exist anyway) and put everything into the hands of the user making owning any personal info without a signed direct consent a data protection offense. Reselling data (in any form) or removing signatures should be a criminal offense.

It will be sufficient for one large economy (f.e. Eu) to do that. All the rest will be dragged kicking and screaming into the new world (old actually - if you read Stephenson, Hamilton, etc - it is all there).

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Happy

Re: BTW: Anonymized data is a 'fake news' story as confirmed here:

I had a read through your link and to be honest I wondered why I get few adverts and offers then I realised Ghostery must help as they suggested. The bigger issue for me is to work out why the few adverts I do see are so far wide of any use or interest to me. If they really are doing all this huge effort, they are buying old rotted rope not new and three legged racehorses on which to bet. I almost only ever use one device in one location so perhaps I bore their algorithms to dead.

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Health care is mighty expensive to deliver

Doubly so in America!

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Anonymous Coward

I thought that Google DeepMind had the monopoly on access to people's private health data

... but perhaps that's only in the UK.

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Gold badge
WTF?

What could go wrong with such a brilliant plan?

Answer. Everything.

Did not ask for. Do not want.

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WTF?

Wrong Vector But Action Needed

Having had several family cases of interactions between patients and treatments I have a foot in more than one camp. On Tuesday when the cause of my issue was possibly pinned on a treatment I am undergoing, I told to the physician I was already familiar with side effects. I explained that one antibiotic could and often did abreact with a specific pre-existing condition. He was unaware of the issue and made notes to follow it up.

So while @John Smith 'Did not ask for. Do not want.' sadly there is a need for improved understanding of side effects and wrong diagnostic outcomes. I for one need to avoid the issue being kicked into the long grass of prevarication, while patients 'enjoy' such delights as induced Lupus, anaphylaxis, breathing difficulties and other life affecting afflictions. I have severe doubts that Facebook is the vehicle and while Google might also raise hackles, I wonder who has the resources and skill to achieve the desired improvement in patient outcomes.

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Re: Wrong Vector But Action Needed

"I wonder who has the resources and skill to achieve the desired improvement in patient outcomes."

Well, in the UK it is firmly and squarely the NHS. Which is mostly funded by the public and why most sane minded people rankle at the thought of its services being farmed off to third party service providers, including service providers in the US who have repeatedly shown that if there is a business depth to be plumbed, then they are happy to dispose of any ethics and go there as long as they can make a fast buck.

That said, there are always satellite services bought in by large organisations to assist them in making progress, and in the case of Google and the medical data; and I'm sure everyone had the best of intentions - but once again it seems to have gone awry with personal privacy being the last thing on anyone's mind as long as the deal gets done and the cash wrought.

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Last month we decided that we should pause these discussions

No acceptance from FB that it is a bad idea. Just a "pause" (of indeterminate length). It will happen, just not yet *sigh*

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Anonymous Coward

See many adverts for pile cream. Starts to wonder how? Must get to the bottom of this.

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If a timely intervention can save or prolong a life, that’s priceless

That's "road to hell" thinking.

Everyone dies in the end so there are inevitable limits to the value of attempts to postpone death. Which is just as well since it's as mad to say that it's worth sacrificing our privacy and social norms simply to save a few unspecified lives as it is to say that Facebook's mission to connect people is worth a few casualties.

Perspective, people, please...

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Anonymous Coward

Re: If a timely intervention can save or prolong a life, that’s priceless

Especially when the lives to be saved are only those who can afford those special treatment, while others can die if they can't pay. Are they going to make public anything they find, and refuse to ask any patent, royalty, etc. on any valuable finding?

Frankly, I hope people like Zuckerberg and Thiel won't live much longer than the average people...

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Anonymous Coward

Is that the reason for havinig a "Zuckerberg General Hospital"...

... in San Francisco?

I really hope the name comes from some different Zuckerberg, because I would be very afraid if hospitals become sponsored by corporations - in exchange forf the patients data, maybe.... There's a lot of money to be made there.

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Re: Is that the reason for havinig a "Zuckerberg General Hospital"...

Sadly no. Its amazing what 75 meeellion spondolics will get you.

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WTF?

Facebook’s "good intentions" ?

The only intentions FaceBook has is to rake in the moolah and shovel it to the shareholders.

Don't talk to me about a "mission to connect people". Connecting people is just the means to the end.

That's why FaceBook will never have a proper Privacy Policy - it literally can't afford it.

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This post has been deleted by its author

Silver badge

Re: You've got piles!

And here's an ad for some ointment. Or maybe you're private messaging a friend about that hot session last night, and now a bit of a tingle. Fear not, here's an ad for a confidential, discrete STI clinic. Or an ad for a divorce lawyer. Or perhaps the algorithms will decide that's best sent to your partner's partner.

Or if you're in politics, perhaps that data will be of interest to some company that compiles political intelligence. Which is probably why politicians have now realised that data horders are targeting them, not just us.. So something must be done! To protect them, if not us. See also UK data retention that has an exclusion for our politicians, even though they may be involved in illegal activities.

But there needs to be a concerted ethical cleansing of the entire industry to make it clear that this kind of data hoarding & trading is not acceptable. At the very least, providers like Facepalm or Google should allow full profile views of the people they're profiling, with an ability to delete or correct data.

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This post has been deleted by its author

Silver badge

Re: You've got piles!

I can see that if the data was not anonymised, that this ad targeting could work, but the article stated anonymised. Which then means, why do Facebook need the information ?.

They're a business. So unless this activity is spun off and ring-fenced inside a non-profit, there's an expectation that they'll be able to make money from it.. And the medical business is huge, either directly trying to sell products, or indirectly reselling data to insurers so they can refine their risk profiles and adjust premiums. And there's also a risk that the data may just leak into the hands of people that don't have our best interests in mind.

Then the problem with anonymising data is it's often fairly easy to de-anonymise it. For the data to have value, it'd need some identifiers, like age, gender, location, social status etc. Those can be combined with existing personal data to individuate it. Especially if you can also cross-check with messaging or searches. So for example I'd had a procecure called a sympathectomy. I didn't know what that meant, so I looked it up. I also just had a letter about increasing my antihyperalgesics, and looked that up as well. I've no idea how many people in my town have similar medical conditions, but if those treatments are in my 'anonymised' record, it would narrow any matches considerably.

And it's not just Facepalm after this. Google recently did a deal with Moorfields to gain access to their patient data.. Without those patient's consent.

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Anonymous Coward

Sounds Good

I don't see a problem. I'm sure there are safeguards in place to prevent things like: Matching "anonymized" medical data with FB user data and sell that info to life insurance, medical insurance and prospective employers.

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Anonymous Coward

Would You Lie To Me, Baby?

Can we all just agree to all enter the same data for everyone, everytime in social media? I thing a good start when prompted for a name: "I am Spartacus!"

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Re: Would You Lie To Me, Baby?

> "I am Spartacus!"

No, I'm Brian!

And so's my wife.

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Anonymous Coward

Who was in talks with Facebook?

I'd dump my doctor if I knew they were talking to FB.

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Now they want my medical history too?

Oh heck, someone is just wanking.

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