No there doesn't. If I don't want my personal information being provided to Google by the NHS it shouldn't happen. In a country where private healthcare isn't an option for most, the only option (the NHS) shouldn't be giving personal data to private, foreign companies, in breach of the law. 'It'll make my job easier' is awful reasoning for violating privacy and the law.
I also recognize that this might be a false binary, that streamlining the process might be orthogonal to maintaining privacy, but for the sake of argument let's assume they are not totally orthogonal.
I also don't think it's a debate we really need. More and more people are wearing health tracking devices. There have been research studies done through mobile apps. People are tracking health data themselves more and more and a lot of those people are going to be willing to share it. Let it happen naturally instead of opening the floodgates and leaving people without a choice.
Imagine being able to have 10x more patients for a drug effectiveness study, or being able to look at the entire patient population for adverse drug reactions/interactions. All the datasets we have for this sort of thing are currently pretty poor. Despite this, the FDA mines datasets like the Adverse Events Reports database [1] to identify drugs that are performing poorly. With better, more complete data, the FDA could far more quickly identify adverse drug interactions and drugs that are harming patients more than they are helping.
Medicine is inherently about rare events. Most of us are mostly healthy most of the time. More data by definition helps you find those rare events when someone is sick or are risk. As we start to ask more difficult questions about co-occurring events, cancer detection or genome associations, our statistical tools become powerless to find the weak signals in the data. The only real solution is vastly more data.
[1] https://www.fda.gov/drugs/guidancecomplianceregulatoryinform...
You cannot only infer everything aspect of health from a single ultrasound scan, which is far more detailed. So what makes you think it would be possible with an App and a heart rate sensor?
One directly causes harm to people. The other _potentially_ causes harm, only if that data gets into the wrong hands and/or is misused. I think saving more lives is worth considering the tradeoff and striking a balance somewhere in the middle (e.g. gathering consent, opting in/out, transparently seeing who what data is shared with, etc).
My point being that your twisting of my words to the point they are unrecognisable is silly. Some people may look at my policing suggestion as a positive you look at it as a negative. Same thing applies to privacy. You may trust doctors (and corporations) and mistrust the police, others feel the opposite way - or trust neither.
It is not that.
It’s "giving all information that exists about your medical history to a corporation that already tracks 70% of all payment processes and 96% of website accesses, and which aims to fully control your life". That’s a 1984 scenario if I’ve ever seen one.
I want my medical history to be analyzed, especially in aggregate of everyone else's: to find anomalies, develop new medications, advance science, better understand the genome, and a myriad other "positive" outcomes that come from a system like this. I don't care if the NHS builds their own data crunching system or they contract it out to someone else (although in this case I'd lean towards preferring someone else with a track record in ML already, e.g. a leader like Google) -- what's most important is the medical advances that are all but guaranteed to come from it, not the potential threats that could come from its potential misuse.
It can be argued that Google, specifically, is too biased to handle the data (in which case, it sounds like they just need to be more transparent with how they're using it). It could be argued that it could fall into malicious hands that would blackmail or do "evil" things like raise premiums (to which transparency and security are, obviously, very important). It could be argued that the chance of misuse outweighs the chance of it doing any good, and so on. Those are good arguments, and address vulnerabilities in a system that shares extremely private data, and each concrete criticism opens up the conversation to how to improve the approach. Just saying it'll be like 1984 isn't very helpful to argue. How will it be like 1984? How can we address that?
If technology can be used for good _and_ bad, we put checks in to make sure it's used for good and not used for bad; we (as a species) don't avoid creating it altogether. Transparency, security, accountability, verifiability, etc are all problems we've solved in similar situations throughout history to make sure a system benefits everyone, even when there is a risk of bad players. I assume you have a bank account, even though a bank manager could just bag up all the money and walk out with it any day (or not).
Not to be cliche, but: with great power comes great responsibility. Utopian goals like "solving disease" are always going to come with the risk of someone misusing some new panacea-enabling technology to spread an even worse disease. We should be making sure technology is properly checked and balanced so we can actually use it to do good, not fighting technology (or advancements in health or technology) from existing in the first place because of fears of "what if".
Independent research institutes, funded by endowments, taxes or donations should be able to.
But for-profit companies not, because they will find a way to abuse the data.
I’ve been running IRC bouncers for quite a while, and running stat services. Just the data you can correlate from that – when are users active, what’s their ping at what times, what’s their probable timezones, when do they go afk – allows you to correlate the location of users down to a town, without even having access to the IP. With access to that, it gets even better. Merely with IRC logs you can find out who knows whom, or interacts with whom, if you have detailed enough message logs. This is enough that most people get creeped out if you show them what you can correlate merely from that, and consider it a violation of privacy.
Google is orders of magnitudes worse. The data that you can correlate simply from what Google already has about you – I’ve decompiled quite a few Google applications for research purposes, and analyzed their analytics code – is enough to deanonymize any pseudonymous data. Better yet, it allows you to track where a person is at any time, who they know and talk with, what they read, see, what they listen to. What they pay money for, and who they love.
This dataset is already extremely extensive, and it’s in control of a private corporation that frequently violates antitrust laws to gain more and more power in more and more markets, and whose former CEO has said "privacy is dead". This power is far too much for any company to control, and it should be under democratic control, and not available to people who have something to gain from abusing it.
The reality is, the more data we have on people the more we can help people make better decisions across their lives. If aggregate medical data identifies a way to save lives or help curb waste/reduce C02 emissions etc... then we should be doing that.
Personally I don't mind Google or similar seeing my not very interesting data.
Patient consent would make the data much less meaningful as it would remove datasets in a non-random way (better educated people might more likely opt-out). So that's no good solution either. I had recently a doctors visit and was asked exactly that. I opted out as I have no control over the data when released.
Obviously as you said you're in the US and it sounds like your situation is very different (you haven't identified a law stopping your work just an ethics board that won't sign off for a reason you don't know).
Remember that what has been decided, and what is actually the case, are not always the same. That's why people advocate for changing the law. OP thinks the law is too restrictive; saying "well that's what the law is" is not much of a reply.