I just wanted to share a quote that I think is completely magnificent.

"Saying that you don't care about privacy because you have nothing to hide is like saying you don't care about free speech because you have nothing to say."

- Edward Snowden

I have pretty mixed feelings about that. I get the point, I do. But I work for a company trying to do things with A.I. and healthcare and social media that would seriously help people. We are constantly in a position of begging people for their data, even anonymized.

In Finland every medical record is recorded and accessible for research purposes. The things that they can do and understand because of a simple idea of share your fucking data! is unbelievable.

I want to join people when they campaign for their privacy, but sometimes I think aspects of that same idea are holding us back

@practiseSafeHex You do realize you're asking for THEIR data, right? You sound like a pissed off robber... "Just give me your money, already!"

@aswinramakrish meh. This seems like a fairly obvious greater good thing, especially since it's anonymous. It's not like they are requiring your hard earned cash or body parts, it's just anonymous data. Giving data about healthcare just makes sense for improving it for everyone!

Of course that having enough data can make research easier, but we must respect someone's freedom not to allow collecting or processing of their data. If someone wants to provide the data, that's awesome, but no one should be entitled to that data just because that is for the "greater good".

P.S. I'm kinda scared when I see "social media" and "healtcare" in the same sentence :D

@aswinramakrish yes if we have THEIR data and enough of it and enough variety we can detect patterns. Detecting patterns means understanding and understanding leads to fixing curing or fixing.

Case and point. Apple announced a plan to share anonymised Apple Watch heart rate data with Stanford medical in the hopes of catching undiagnosed heart disease.

Give us access to data and we might be able to save your life. Put up barriers and roadblocks and we’ll make no progress in the next 50 years.

I know it’s not as simple as that, on the extreme end we have the NSA recording every inch of everything.

All I’m saying is, I really don’t agree with the premise that everything should be locked away and inaccessible. There is good as well as the bad.

@practiseSafeHex It's not the question of locking something away it's about choice. I personally would gladly provide you with my medical stats or whatever else you want because I think you're a cool guy or because you're doing something nice, but when you force that on me then I have a problem with that.

@pajaja ha just to clarify the healthcare and social media thing are two entirely different projects and no way connected. Believe me the terms and conditions alone attached to merging both of those is a headache I don’t need.

I somewhat agree with you. Yes I like to have control over what gets sent where and when. But as many have pointed out, if you ask people right now to share their health data they will most likely say no.

If someone then gets cancer and is told sharing data could help others, then will now say yes (most likely). But the issue here is that the data that could have been gathered at the start could have helped improve diagnosis as well as looking for cures. Now that’s lost forever because someone said no.

It’s cases like that, that piss me off. It’s all anonymised, no issues to anyone, but they said no so we have no hope

@pajaja Finland’s constitution says that nobody has the right to opt out of sharing anon medical data. EVERYTHING is recorded and available in anon form to research institutes.

They do this because they view that nobody has the right to deprive others of finding a possible cure / solution etc.

@practiseSafeHex You're making open access to people's health data sound as if it's an open source project. I don't think it's as selfless as you're making it sound. You "need" their data so you can file a bunch of patents and make money. If it's anonymous, I personally wouldn't have any problem with it. But I think it's pretty naive to expect people to give their health data (anonymous or otherwise) for free. You're obviously going to get shit ton of money once that data is available / if you find a cure, so you're definitely gonna have to pay upfront. You need ad campaigns, lobbyists and tonnes of sales people to convince the people to see that there is in fact a greater good.

Anonymized data can still be tracked back to individuals, and not even with much effort. That's the problem I have with it.

Especially with companies like Google, Facebook, Amazon, etc. that specialize in doing *exactly* that.

@Ashkin Well, not to mention the fact that if you're the first, you get to make the rules. We don't want the company to increase some cancer medicine (if they were to find a cure based on this data) overnight by 1300% like Shkreli.

At this day and age I think we should realize the value of data. Google basically choked Uber for using their maps data, once they started gaining traction. So they bought Bing maps and they've built / building their own maps division (which has a majority of ex Googlers, which is a different story). That's for street data which is literally available "out there"

@aswinramakrish
Indeed. It's scary.

If you have nothing to hide, then give me your account and routing numbers.

@aswinramakrish sure he'd likely make a lot of money, but the bigger picture is you'd actually have a cure for cancer or a way to diagnose heart problems before it's too late or something along those lines. And since you can't know in advance whether you're going to need it, you can definitely consider that your payment, but even if you don't it's still the greater good.
Medical research is an odd one because we all want to have a cure for anything that stikes us, but it's really difficult to find a cure or a way to diagnose early without a lot of data.
Let me put it this way, if you were able to say no to sharing your data, would you be ok with not being able to use a cure or diagnosing technology that was possible because other people shared their data?

@Ashkin Thank you!

@practiseSafeHex It should always be consensual at least, very obviously consensual.

Next to that I really hope you use the most hardened security/firewalls/IDS's/encryption for this kind of data!

@linuxxx really? I can’t store it in plain text in a password-less database?

You know it’s much quicker to fetch if you drop that encryption crap right? Think of the UI responsiveness man!

... I am of course joking. Most of the data is used offline to train a model. So it’s actually not even accessible via REST api or anything like that. All extremely locked down.

I think people should be aware of what’s happening and why. But I totally agree with Finland. Medical data is too valuable to allow people to decline to share it. I know that anon is never truly anon. I’ve been aware of cases where someone with an incredibly rare disease is the only one in a county with it, it’s very easy to identify that person in real life. Without sharing it, nobody will ever help him though.

Yes there’s profit to be made, there always is. Profit is made on food, water and heating my house.

There’s also massive expense. Someone needs to pay for the cost of research and development. Ever tried to write code to be FDA compliant? ... it ... is ... complex.

Don’t paint us all with the same brush as Pharama Bro. We’re not snapping up life saving drugs and jacking up the price. We’re trying to fix things that don’t currently have a solution

@practiseSafeHex You bring up some really good points and I actually do agree with you that everything would be a lot better if everybody shared medical or scientific data. But I also disagree with you a whole lot, especially regarding the whole Finland medical policy thing. If you enforce people to do something, even if it would be for the greater good, you're abandoning one of the most important things in this world, people's right to choose. I mean the world wouldn't be a better place if everybody shared their memories in a collective mind. But nobody's gonna do that. Because that's yours. And if you want to do that, then that's fine. And would like that everything in this world was a choice. You may choose If you want to go to school and so forth but everybody was so educated and had such a good common sense that the y would still choose to go to school. Or if it was a choice but you market it good enough and people will do it anyway.

Continuation in the next comment.

Continuation.

You wouldn't want your choice to be circumcised or not to be taken away from you. What if that was enforced for the greater good. You wouldn't want that. You need to be given a choice and enough information to be able to make an educated choice to be or not to be circumcised. And that's the point

@practiseSafeHex Okay, cool. But you're missing the whole point of the quote. It has nothing to do with your magnificent AI company, it has to do with government mass-surveillance.

@aswinramakrish Please provide citation or don't make wild claims.

@aswinramakrish Ahahahahahahahahaha okay dude.

Look, I know about how bent the government is, but that specific quote is about government surveillance, which anonymous heath data does not help. Not to mention that you would have to prove that X company was actually giving up that data, which is unlikely.

So please, chill the fuck out.

@aswinramakrish Go live in a hut under a mountain dude. I've written papers on government surveillance, I know what I'm on about.

@aswinramakrish Why are you such a pretentious prick. And why are you assuming things about what I do and don't know. Pseudo-intellectual twat.

@aswinramakrish You have some serious insecurities bro. Should get yourself checked out or go to your safe space.