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Google accused of 'trust demolition' over health app
- sandworm101 8y agoThe next wave of medical advancement may require us to give up some privacy. It has worked in the past. Once upon a time childhood cancer was a death sentence. Cancer in young kids moves very fast. Doctors in the 50s/60s did their best but studied the problem as individuals, writing and presenting papers based on patients at their hospitals. But nobody had enough data to discover the incremental improvements. Then docs started getting together and adding patients from multiple hospitals into larger and larger studies. From this larger pool of patients came trends and treatment advice that, today, means childhood cancer is largely survivable. (It is still horrible, but today many childhood cancers are very treatable.) That movement required patient data leave the hands of their individual doctors. Today EVERY kid with cancer is part of multiple studies and it is normal for their information to be shared far and wide. AI may be the next great thing, but it needs data. It may be necessary for patients to again give up a little privacy to enable progress.
- bognition 8y agoThere's a problem with your reasoning here. Most people do not object to the pooling of data for scientific discovery. They object to the pooling of data by company that makes its money by exploiting personal information on individuals.
- FussyZeus 8y ago^ Exactly. I have an app on my phone from my insurance company that tracks my every move. I'm fine with it, because their agreement for it's use specifically says that data is not sold to third parties, nor used in any purpose beyond specifically evaluating my driving. And apparently I'm a pretty safe driver because they give me a fair amount of cash back on it. I would never in a million years let a company like Google or Facebook have that kind of info on me.
- golergka 8y agoWow. I had no idea this exists, but I'm very glad it does.
- sandworm101 8y agoWait until they issue you speeding tickets based on that data. It has happened before (2001) https://tech.slashdot.org/story/01/06/19/187210/rental-car--gps--speeding-ticket https://tech.slashdot.org/story/01/06/19/187210/rental-car--...
- golergka 8y agoI'd be delighted if they made it mandatory. Speeding kills way too many people.
- rocqua 8y agoWe know that driving kills a lot of people. I essentially consider that common knowledge. But it is not 'common knowledge' to me that this is due to speeding. Not that I know different, I'm just surprised to see so definite a statement.
- auslander 8y ago> specifically says that data is not sold to third parties Businesses are for profit. They'll find ways to monetise the data. Wording 'the data' can be bypassed by modifying it, like extracting location heat maps, and selling it instead of raw data. Or/and they may create a service that uses the data and sell it instead.
- Spooky23 8y ago> "their agreement for it's use specifically says that data is not sold to third parties, nor used in any purpose beyond specifically evaluating my driving" Unlikely. The master contract for your insurance company almost certainly allows for information that you provide for a variety of business purposes. Insurance companies pool risk data, and it seems unusual that any negative event would not be shared if captured via this mechanism. Another key thing is to look at the precise wording around "We do not sell your data". That is a weasel-wording that usually means "We will rent your data" or "We will provide your data at no cost to our business partners, for our business purposes".
- deleted 8y ago[deleted]
- Spooky23 8y agoI have no problem with data sharing for clinical or research purposes, especially since ethical standards for medical research provide meaningful privacy protection. I do have a problem with insurance organizations and pharmacies abusing data sharing agreements intended for subrogation and similar procedures to manage pharmaceutical sales quotas and conduct outbound marketing. Case in point: My wife was admitted to the hospital due to complications that from what was an early miscarriage. The health insurer sells data that allows an advertiser to surmise that there was a hospital admission to the OB department. The PBM provides anyone paying with information regarding prescriptions before my insurer even gets the claim. Outcome: An advertiser (infant formula company) determines that my wife is likely pregnant and likely to deliver on Month/Day/Year. Guess what arrives on that day? A Fedex care package of formula. That was a very hurtful event for us, and similar violations happen thousands of times every day.
- zaroth 8y agoThere’s a “funny” Target story where a family starts getting ads and coupons for baby products in their Target mailers after the teen daughter becomes pregnant (unbeknownst to the parents). In that case it had nothing to do with mining medical records for advertising purposes. The daughter’s browsing and shopping habits sent a strong enough signal to trigger the ad targeting. I don’t know anything about your case, and am very sorry to hear about your family’s loss. I don’t know if you can draw a line to the insurance company selling you out. But now I’m very curious to learn more about what data insurance companies are allowed to sell, and to whom.
- gowld 8y agoIt may not be the insurance company specifically, but anyone who has been pregnant in the USA can confirm that getting medical care for pregnancy leads to marketing. They even give photography companies access to patients in the delivery ward.
- Spooky23 8y agoI appreciate that. I've posted this a few times on these matters because it was very impactful to us and really sets the stage about the farce of medical privacy. It is my small way of perhaps inspiring a positive outcome from an awful event. I know the insurance companies, hospital and PBM sold pieces of the data because the formula company immediately upon request disclosed the list that they obtained my name from, and identified who had the relevant information by process of elimination. I don't know specifically all of the ways this is done. Basically, claims data is sold, but not diagnosis. There is other context (type of admission, source of claim) that can identify the reason with confidence. (ie. ER admission, hospital admission, claim from OB/gyn) The prescription, can strengthen the assumed condition, and your pharmacy provides that data in near real-time to pharmaceutical companies, brokers and others. That script is tied to the DEA number of the doctor and can be cross-referenced to the admission. The formula company takes that data and mashes against people who have used their coupons in the past.
- ceejayoz 8y ago> Then docs started getting together and adding patients from multiple hospitals into larger and larger studies. It's important to note that these studies are subject to pretty rigorous review by IRBs (https://en.wikipedia.org/wiki/Institutional_review_board https://en.wikipedia.org/wiki/Institutional_review_board).
- endorphone 8y ago"The next wave of medical advancement may require us to give up some privacy. It has worked in the past" Of course. But companies like Google, Facebook, Amazon, Apple (yes, I'm including Apple), and others should be a mile from that data. Google and Facebook particularly are ill equipped, from a moral and focus perspective, to have anything to do with this industry.
- Jmcdd 8y agoSurely anyone bothered by this can just request that their data be nuked? Thanks GDPR.
- LeoPanthera 8y agoWill the GDPR still apply in the UK after it leaves the EU?
- pdpi 8y agoAIUI, the GDPR by itself doesn't apply to the UK (or any other EU member state in particular). Instead, the GDPR forces member states to enact laws that implement those rules. This means that, after Brexit, the GDPR implementation laws will still be law in the UK. Depending on the outcome of the Brexit negotiations, the UK might or might not be in a position to repeal those laws at their own discretion.
- detaro 8y agothe key word is General Data Protection Regulation. Regulations are law, and apply directly, no local implementation needed (except for "interfaces", e.g. in the case of GDPR changes to existing laws to clarify how they interact with GDPR and to make exceptions GDPR explicitly allows the states to make) Directives are the ones that only direct the states to enact laws implementing them.
- chippy 8y agoYep, I think the current understanding is that all EU laws will still apply - they kind of grandfather them in - with the understanding that they could repeal them at a later date (as they can for any law).
- ChrisSD 8y agoThe core issue: > "DeepMind repeatedly, unconditionally promised to 'never connect people's intimate, identifiable health data to Google'. Now it's announced... exactly that. This isn't transparency, it's trust demolition," [Lawyer and privacy expert Julia Powles] added. I remember this from when DeepMind was first given access to UK patient data. The firewall between them and Google proper was a major point at the time. The article is scant on details but while this move might not "demolish" trust it does seem to erode it.
- mtgx 8y agoThis is why Google's so-called "AI ethics board" is nothing but a sham. The AI ethics board should have already stopped this, or the fact that Google intended to use its AI in China for censorship, or use it for military drones to find targets to kill. But it didn't. It's just another PR thing Google did to get people off their backs while they continue with their original plans for AI in advertising/user tracking.
- aylmao 8y agoI'm not sure why this is being down-voted, could someone thinking of down-voting comment? EDIT: now I'm being down voted? Could someone explain?
- housingpost 8y agoHN has a huge amount of Googlers as users. That’s the downvotes. Just look at the Googlers in this thread defending the company.
- aylmao 8y agoMakes sense, actually /:
- netcan 8y agoDo you happen to know what, more specifically than "ai ethics," the board considers part of its job? Is privacy issues around data sufficiently "ai" to be part of this. I mean, I can easily picture a board of hyper-intelligent academic types who are only interested in skynet or brain-in-a-vat situations.
- denzil_correa 8y agoAt this point of time, the only way to ensure privacy is to have it embedded as a legal contract. Otherwise, all claims of "never use" or "will not be shared" means nothing.
- ChrisSD 8y agoBtw, can the link be changed to the non-AMP url[0]? I was wondering why the page was taking so long to load until I noticed. [0]: https://www.bbc.co.uk/news/technology-46206677 https://www.bbc.co.uk/news/technology-46206677
- SquareWheel 8y agoThe amp version is easily five times faster here. Check your access settings.
- ninkendo 8y agoWhat's an "Access setting"?
- SquareWheel 8y agoIf required content for the page is being blocked.
- sp332 8y agoI'm not really pro-AMP, but your link takes twice as long to load for me as the AMP one. And I'm on Firefox.
- ChrisSD 8y agoThe link above loads more or less instantly for me. The AMP version shows nothing but white for awhile before showing the page.
- crazygringo 8y agoThe article doesn't seem to have any substance, it's just an article about one person's opinionated tweet. The team is joining DeepMind/Alphabet, and it appears DeepMind promised that health data would never be joined to your Google account. And there's zero evidence that they are joined or that they would be joined. As far as I can tell, fearmongering like this would suggest that Alphabet couldn't ever deal with health care info, which feels silly... There are plenty of very strong laws enforcing health care privacy (e.g. HIPAA in the US), so this really just feels like FUD.
- AlexandrB 8y agoThe specific language was: > [data] "will never be linked or associated with Google accounts, products or services" Streams is plainly a Google product and is probably using deep learning models trained on this data. Morever, patients were never given the option to opt-out of this data collection at all.
- crazygringo 8y agoI can't tell what you're trying to say... What is trained on what data? The point is that health care data will never be linked to your "Google account", e.g. your Gmail/YouTube/etc. or other Google services -- AdSense can't show you ads based on a hospital visit. DeepMind is part of Alphabet, like Google is part of Alphabet. DeepMind can do its thing without ever touching Google accounts or Google data.
- mayankkaizen 8y ago"DeepMind can do its thing without ever touching Google accounts or Google data." May be it is the case at present. But I see zero probability that it will always be the case.
- je42 8y agoHealth products need to be designed with privacy as a core pillar. Just pumped everything to the cloud and then figuring out - was nice a couple of years ago. Thankfully the laws are catching up and hopefully companies like Google will not only start to comply with them but actually follow the underlying spirit of these laws.
- drcode 8y agoThe health+ML space is in a real ethical quandary right now, because at some level it's in all of our interests to have machine learning algos run against large patient data sets. I'm guessing that 100 years from now people will look down on us for not solving this coordination problem faster, and using all of the medical data we've collected to accelerate progress on disease research... ...but how do we do it without also transforming into a distopia of "radical transparency"?
- 013a 8y agoI tend to believe that it isn't a problem with the core idea or philosophy of privacy (and I'm an intensely staunch privacy advocate). I believe it's a problem with Google. Or more generally, any company which has any financial incentive to use data in ways that the customer does not expect. It's about the human responsibility on the receiving end of the data, and Google is a Bad Seed. With the Apple Watch, Apple partnered with Stanford for a heart study to identity a-fib using smartwatch-sourced heart rate data. They attracted 400,000 participants. [1] I would guess that exactly zero of these participants feel cheated by their participation in this study (so far). Why? It's the same general concept as this DeepMind stuff. I'd argue its three things: clear, precise, & opt-in consent of the data shared, clear & constrained explanation of its usage, and trust in the receiving parties. Apple and Stanford have these three things in spades. Google is incapable of all of them, and you can't Design or Buy your way through corporate culture and customer trust. They gather and correlate so much data, their consent process is far from precise or opt-in. Once they have the data, they have a history of using it for Whatever they want. Which all ties back to trust; Google has permanently ruined any trust customers would have toward them for things that Actually Matter. Point being, other companies can pick up this mantle. It won't be Google. And if you're a health-focused company, joining Google is a literal death sentence for your product. You'll end up prototyping something amazing, then be completely incapable of deploying it for any public good because no one will give you data. [1] http://fortune.com/2018/11/02/stanford-apple-watch-heart-study/ http://fortune.com/2018/11/02/stanford-apple-watch-heart-stu...
- gowld 8y agoWho doesn't have an incentive to misuse data? A company can sell it to advertisers. A government can use it to run a genocide. An individual can use it for blackmail. Who's left?
- CaptainZapp 8y agoWhen being admitted to hospital, or even for an MRI one of the questions on the form is usually Are we allowed to share your data in anonymized form for research ? I never thought much of that and, of course, always answered Yes. Nowadays, and after the shit that Facebook[1] and Google are tyring to pull off my answer is a surrounding: Hell, No! Do those guys actually consider how much they hurt science and by extension patients? Scum! [1] http://fortune.com/2018/04/06/facebook-medical-data-sharing-hospitals/ http://fortune.com/2018/04/06/facebook-medical-data-sharing-...
- brlewis 8y agoDo you think the hospital is lying about "anonymized form"?
- fenwick67 8y agoAnonymized is a very loaded word, technically my IP address is anonymous but companies still figure out who I am from it.
- ams6110 8y agoNo, but there's really no such thing as anonymous anymore given the corpus of data a company such as Facebook or Google have. Once they have just a few "anonymous" clues, such as zip code, year of birth, race, etc. they can probably connect any datum with an individual with pretty high accuracy.
- tantalor 8y ago> "anonymous" clues, such as zip code, year of birth, race Those are examples of PII, not "anonymous"
- gowld 8y agoIt's not so clear-cut. https://en.wikipedia.org/wiki/Personally_identifiable_information https://en.wikipedia.org/wiki/Personally_identifiable_inform... And that's the point. Anything can add up to PII if you have enough clues. PII is a statistical concept, not a binary concept.
- duxup 8y agoWhat does this AI do medically? Is it just playing the odds "oh this and this are probabbly this or this or this."?
- EpicEng 8y ago> "oh this and this are probabbly this or this or this." What do you imagine a doctor does? They use their education and experience to make an educated guess as to a course of testing/treatment. ML models are developed under the supervision of doctors (often leaders in their field) and engineers and are validated against large/statistically significant cohorts. Source: Spent five years working for a company which released an IF/ML prognostic model for late stage prostate cancer.
- duxup 8y agoI don't doubt a doctor does the same thing with varying levels of success. I was just curious what the end game was with it. I am a bit skeptical of just playing the averages but no more / less than individual doctors.
- EpicEng 8y ago>I am a bit skeptical of just playing the averages but no more / less than individual doctors That would be the minimum standard, but you gain efficiency and lower costs (well, theoretically... companies throw crap in just to hit a higher reimbursement tier.) The models often do better than doctors (where applicable) because often times doctors won't agree with each other. Like in any profession, you have varying levels of competence. My work has always been in the realm of pathology, so I don't know much about other areas. In pathology you will often see five different doctors give five different interpretations when looking at the same sample.
- misterman0 8y agoThis.
- Ensorceled 8y ago
- scrooched_moose 8y agoThis gets to the core reason I've basically given up on all new services. Eventually, no matter how virtuous a company claims to be, they'll sell the company to FAANG who I try to avoid as much as possible. When the true end goal of most startups is an exit payday to Google I can't trust them with my data. It's frustrating that avoiding Google isn't even as simple as "Don't use Google". It's become "Don't use anyone who might be an acquisition target for Google".
- Cyclone_ 8y agoApple hasn't proven to be untrustworthy with data, they have a much different business model than the others. I've never heard of Netflix doing anything that bad with data either.
- scrooched_moose 8y agoThat's true, I just grabbed the acronym for a shortcut to "the huge technology companies who suck up user data all costs". It probably wasn't fair to include them, and Microsoft might be worth tossing in. FAAM?
- dr1ggins 8y agoYou removed Netflix and kept Apple in the new one.
- FabHK 8y agoDid you mean FAMG?
- scrooched_moose 8y agoYeah, I did. Oops.
- ams6110 8y agoFor now.
- 8y ago
- Clariti 8y agoI never use to give much thought to these forms in hospitals but these days with privacy issues I am bothered when I get such a form.
- growlist 8y agoI'll be contacting Moorfields to request my eye scans are not passed to Google.
- orbifold 8y agoWhat I really hate about this is how once great nations like Great Britain, which at one point ruled 1/5th of the planet, surrender more and more of their competencies to cooperations. It is high time to fight this and stem the tide. The rulers of these cooperations should tremble before the might of (realistically only some) nation states, instead it is the opposite way around.
- lawlessone 8y ago>once great nations like Great Britain, which at one point ruled 1/5th Nah screw that empire. 29 Million killed in India and 1 million killed in Ireland.
- orbifold 8y agoWell that is kind of my point, as a company you would think twice about screwing over a country that is capable of such brutality. If you look at Britains leaders today they are old, really poor and hold second class BA degrees in geography, compared to the highly skilled and wealthy adversaries they are up against, such as Eric Schmidt or Jeff Bezos, they are basically outcompeted in every aspect. It is not a level playing field neither on an individual nor even organisational level.
- Quarrelsome 8y ago> What I really hate about this is how once great nations like Great Britain What? We threw all that away 100 years ago. We've been selling all of Grandma's silverware for the past century to keep the lights on. To reach back into history and make things relative to Great Britain's former power is disingenuous. Britain as well as the rest of Europe decided to spend almost all of its "advantage" on killing each other. It got what it deserved. The process of stripping the country further back and selling the silverware kicked in harder around the Thatcher era (1980's). Lets not forget that earlier kicks which include the second world war, the US suddenly removing Lend-Lease because the British people voted in a socialist government and the Winter of Discontent. If you chart the history its not surprising. What's surprising is that people are still in a suspended state of disbelief about Britain's place in the world... including its own citizens (a la Brexit).
- petilon 8y agoSpeaking of 'trust demolition', here's how Google has demolished my trust: In Chrome they have added a new option: "Allow Chrome sign-in". It appears to be a placebo. Even if it is turned off, if you sign in to Gmail then your browser is also signed in, enabling Google to surveil you even more. There appears to be a pattern here. Google maps tracks your location even when you turn off location history. I used to be an unabashed Google fan, now I am in the process of de-googling my life wherever I can.
- bagacrap 8y agoNot sure how you could justify running someone's code on your machine if you don't trust said someone not to "surveil" you, regardless of purported features of that code.
- FabHK 8y agoWelcome to the club. I'm on DDG for search, Apple Maps where possible, Zoho for shared spreadsheets etc., Youtube in a browser in incognito mode, or downloading via youtube-dl in the terminal, and my old gmail is set to forwarding to other accounts, which I primarily use. Anything else one can do to degoogle? (How nice it would be if that word also entered the language...)
- naaymoo 8y agoWhoever wrote this goes into detail about how Google should not be trusted with this app, and they will now have the power to post your personal information online. This app could prove helpful to doctors and nurses. I do agree with the author that it is scary that a multi-million internet company will have access to medical information, but the thing is that hospitals have been using internet-based devices for storing patient information for years. Technically, Google could have already had access to all of this information (they wouldn't because that is illegal). We also have no idea how this app works, it could in end to end encryption, which means that Google could not get the information if they tried. We have no idea what Google's plans are, but I am fairly sure they will not be breaking any HIPPA laws.
- KaiserPro 8y agocould help doctors They are not bound by HIPAA is its the UK.
- throw2016 8y agoThis is the perfect example of why unconstrained self interest and greed are destructive for the ecosystems that sustain them. There are no limits to greed and that's why there are serious constraints on all sorts of things that can damage the commons and why the only legitimate force is the common good. And a lesson for the tech community who have seen first hand the rapid transformation of seemingly well meaning ethical actors into self obsessed exploitative bad actors completely divorced from ethics.
- deleted 8y ago[deleted]
- carapace 8y agoCompare and contrast this story about a staunchly Western nation and a capitalist corporation with the story that just appeared [1] about Venezuela and China's ZTE. In China the tech/data hegemony is part of the central government while in the West it's separate, FAANG et. al. are expected to keep a distance from the government and vice versa. I was trying to imagine a scenario for a science-fiction story set around 2040, and my brain conjured an image of the people of China chipped and managed by computer... It was chilling. As for the West, I imagine we're going to have to nationalize the data and infrastructure of the tech companies OR acknowledge them as the new technocratic form of government. Either that or bifurcate into Morlocks and Eloi, in which case it doesn't matter what form the control system takes. I guess what I'm asking is, which system do you think will be stable in the long term ("long" meaning 20 to 70 years, the time it takes for the weather to get really hard to ignore), and why? Or will something else happen? [1] "How ZTE helps Venezuela create China-style social control" https://www.reuters.com/investigates/special-report/venezuela-zte/ https://www.reuters.com/investigates/special-report/venezuel... "A new Venezuelan ID, created with China's ZTE, tracks citizen behavior" (reuters.com) https://news.ycombinator.com/item?id=18451109 https://news.ycombinator.com/item?id=18451109
- ocdtrekkie 8y agoI fail to understand how this is legal. It was found the NHS gave DeepMind the data illegally, and the inquiry was only closed because of the assurance Google would never get the data. Now that the inquiry is closed, they are giving Google the data. The ICO needs to reopen its investigation.
- altfredd 8y agoThe most alarming part about this story is that DeepMind's involvement is largely unneeded and their "accomplishments" are superficial to say the least: > DeepMind Health went on to work with Moorfields Eye Hospital, with machine-learning algorithms scouring images of eyes for signs of conditions such as macular degeneration Sorry, but "scouring images of eyes for signs of conditions" on a scale of single hospital is a task for two CS graduates, easily accomplished with freely available machine learning tools. The hospital in question could have done that themselves at minuscule cost. Are UK hospitals legally prohibited from hiring non-medical staff or something? Instead they are partnering (conspiring) with international companies to... do what again? Write Android apps and feed images to neural networks? In exchange for their entire medical data?? Is UK becoming another India or something?