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Excellent. What were they waiting for up to now?? I thought they already trained on my data. I assume they train, even hope that they train, even when they say

Excellent. What were they waiting for up to now?? I thought they already trained on my data. I assume they train, even hope that they train, even when they say they don't. People that want to be data privacy maximalists - fine, don't use their data. But there are people out there (myself) that are on the opposite end of the spectrum, and we are mostly ignored by the companies. Companies just assume people only ever want to deny them their data. It annoys me greatly, that I have no tick box on Google to tell them "go and adapt models I use on my Gmail, Photos, Maps etc." I don't want Google to ever be mistaken where I live - I have told them 100 times already. This idea that "no one wants to share their data" is just assumed, and permeates everything. Like soft-ball interviews that a popular science communicator did with DeepMind folks working in medicine: every question was prefixed by litany of caveats that were all about 1) assumed aversion of people to sharing their data 2) horrors and disasters that are to befall us should we share the data. I have not suffered any horrors. I'm not aware of any major disasters. I'm aware of major advances in medicine in my lifetime. Ultimately the process does involve controlled data collection and experimentation. Looks a good deal to me tbh. I go out of my way to tick all the NHS boxes too, to "use my data as you see fit". It's an uphill struggle. The defaults are always "deny everything". Tick boxes never go away, there is no master checkbox "use any and all of my data and never ask me again" to tick.

12ian34 1y ago
not remotely worried about leaks, hacks, or sinister usage of your data?
- londons_explore 1y ago
  I would far prefer the service use my data to work better and take a few privacy risks. People die all the time from cancer or car accidents. People very rarely die from data leaks. Some countries like Sweden make people's private financial data public information - and yet their people seem happier than ever. Perhaps privacy isn't as important as we think for a good society.
  - soiltype 1y ago
    public/private isn't a binary, it's a spectrum. we Americans mostly sit in the shithole middle ground where our data is widely disseminated among private, for-profit actors, for the explicit purpose of being used to manipulate us, but it's mostly not available to us, creating an assymmetric power balance.
    - ljosifov 1y ago
      I agree with your stance there. Further - the conventional opinion is that the power imbalance coming from the information imbalance (state/business know a lot about me; I know little about them) is that us citizens and consumers should reduce our "information surface" towards them. And address the imbalance that way. But. There exists another, often unmentioned option. And that option is for state/business to open up, to increase their "information surface" towards us, their citizens/consumers. That will also achieve information (and one hopes power) rebalance. Every time it's actually measured, how much value we put on our privacy, when we have to weight privacy against convenience and other gains from more data sharing, the revealed preference is close to zero. The revealed preference is that we put the value of our privacy close to zero, despite us forever saying otherwise. (that we value privacy very very much; seems - "it ain't so") So the option of state/business revealing more data to us citizens/consumers, is actually more realistic. Yes there is extra work on part of state/business to open their data to us. But it's worth it. The more advanced the society, the more coordination it needs to achieve the right cooperation-competition balance in the interactions between ever greater numbers of people. There is an old book "Data For the People" by an early AI pioneer and Amazon CTO Andreas Weigend. Afaics it well describes the world we live in, and also are likely to live even more in the future.
  - 12ian34 1y ago
    Sweden is a very poor example, all that is public is personal taxable income. That's it. You're comparing apples to oranges. And how is your home address, and AI chatbot history going to cure cancer?
  - Gud 1y ago
    That financial data is very limited. Would it be just as acceptable if these companies knew where and what you purchased?
- ljosifov 1y ago
  If they leaked bank accounts numbers, or private keys - I would be worried. That has not happened in the past. About myself personally - my Name Surname is googleable, I'm on the open electoral register, so my address is not a secret, my company information is also open in the companies register, I have a a personal website I have put up willingly and share information about myself there. Training models on my data doesn't seem riskier than that. Yeah, I know I'd be safer if I was completely dark, opaque to the world. I like the openness though. I also think my life has been enriched in infinitely many ways by people sharing parts of their lives via their data with me. So it would be mildly sociopathic of me, if I didn't do similar back to the world, to some extent.
  - 12ian34 1y ago
    So you are projecting sociopathy on those that choose to keep their lives more private than you? Like you said, basic personal details are essentially public knowledge anyway. Where do you draw the line personally on what should be private?
    - ljosifov 1y ago
      Not at all, on the contrary, I chose my words carefully ("mildly sociopathic OF ME") as to avoid casting shade on others. Saying "this is how I feel", so to preclude judging others. Everyone makes their own choices, and that's fine. Boundaries - yes sure they exist. I don't have my photo albums open to the world. I don't share info about family and friends - I know people by default don't want to share information about them, and I try to respect that. Don't share anything on Facebook, where plenty share, for example. At the same time, I find obstacles to data sharing codified in the UK law frustrating. With the UK NHS. 1) Can't email my GP to pass information back-and-forth - GP withholds their email contact; 2) MRI scan private hospital makes me jump 10 hops before sharing my data with me; 3) Blood tests scheduling can't tell me back that schedule for a date failed, apparently it's too much for them to have my email address on record; 4) Can't volunteer my data to benefit R&D in NHS. ("here are - my lab works reports, 100 GB of my DNA paid for by myself, my medical histories - take them all in, use them as you please...") In all cases vague mutterings of "data protection... GDPR..." have been relayed back as "reasons". I take it's mostly B/S. They could work around if they wanted to. But there is a kernel of truth - it's easier for them to not try share, so it's used as a cover leaf. (in the worst case - an alibi for laziness.) I'm for having power to share, or not share, what I want. With Google - I do want them to know about myself and use that for my (and theirs) benefit. With the UK gov (trying to break encryption) - I don't want them to be able to read my WhatsApp-s. I detest UK gov for effectively forcing me (by forcing the online pharmacy) to take a photos of myself (face, figure) in order to buy online Wegovy earlier today.
- ljosifov 1y ago
  I'm worried, it's not like I don't care. For example, I'm worried that Google is such a huge ginormous target, that at some point their Gmail will be broken. At the same time, there are benefits to sharing data. There are benefits to me, in Google using the information it has on my, to make my life easier. In this case, I judge that Gemini using my data to train, is a low extra risk for me. Compared to all other risks I take, for doing things in public. Including writing this on public forums, as you do too. In general, I find the ongoing public scare about sharing data, to be anti-thesis to the original spirit of the Net, that was all about sharing data. Originally, we were delighted to connect to perfect strangers on the other side of the world. That we would never have gotten to communicate with otherwise. I accept there might have been an element of self-selection there, that aided that view: people one'd communicate with, although maybe from a different culture, would be from similar niche sub-culture of people messing with computers and looking forward to communication, having a favourable view of that.
  - 12ian34 1y ago
    > the ongoing public scare about sharing data I think this might be a bit of a social bubble thing - I think it isn't a forefront concern for the vast majority of people.
    - ljosifov 1y ago
      I think you are correct there - the majority of the public don't care. They just try to get about doing their daily business and act the best they can under circumstances. So we just click "Accept" to any popup banner make it go away, accept "All cookies" 100 times every day, use Google mail/map/photos/drive and that all involves giving away data, even if in words we say we don't want to give data. So yes obviously the public by necessity act in a rational way, doing cost-benefit analysis. While a cadre of privacy obsessives have made my life worse by lobbying and having their bad ideas codified in the UL laws. Wrote about my experience in the UK medical systems here https://news.ycombinator.com/item?id=45066321 https://news.ycombinator.com/item?id=45066321
j4hdufd8 1y ago
> But there are people out there (myself) that are on the opposite end of the spectrum, and we are mostly ignored by the companies. Companies just assume people only ever want to deny them their data. What? I think you're exactly the kind of person that companies pay attention to, and why they pull moves like this
- ljosifov 1y ago
  My experience in the UK medical systems has been the opposite - wrote here https://news.ycombinator.com/item?id=45066321 https://news.ycombinator.com/item?id=45066321 Google knows what "Home" is for me only in Gmaps, because I went out of my way (put a Label etc) to tell it. I want to be able to tell Google "My home is XYZ", and for Google to use that information about me in all of Google ecosystem. When I talk to Gemini it should know what/where "LJ home" is, when I write in Gdoc it should know my home address (so to insert it if I want it), ditto for Gmail, when I search in Google photos "photos taken at home" it should also know what "home" is for me. I have the impression that we ended up in the worst case scenario. People I don't want to have my data, have access to it. People I do want to have my data, are afraid to touch it, and use it - yes! - for theirs, but also for my benefit too.
blipmusic 1y ago
My life does in fact have priorities above ”LLMs should work a bit better”.
j4hdufd8 1y ago
Are you okay getting ads for shit holistic medication because you had a mental health conversation with AI?
imiric 1y ago
What a ridiculous stance. Do you lock your front door, or use passwords on any of your accounts? Because what you're essentially saying is that you're OK with strangers having access to your personal information. That's beyond the already flawed "I have nothing to hide" argument.
- JumpCrisscross 1y ago
  > Do you lock your front door In trusted neighborhoods? No. But that respect goes both ways.
franga2000 1y ago
Try living in a place with privatised health insurance and you'll quickly see why medical data is some of the most important to keep private.
behnamoh 1y ago
Are you trolling us or do you live in a hypothetical world where companies have our best interests in heart?
beepbooptheory 1y ago
This may very well be a rational stance, but either way, wish one could somehow teleport this sentiment to the Cypherpunk mailing list in the 80s/90s. Of all the things they projected, concocted, fought for.. Nothing could truly prepare them for this kind of thing: the final victory of the product over the people, the happy acceptance of surveillance. They were all imagining terrible dystopias garnered from state violence and repression, never could they begin to imagine it could all transpire anyway because people like not having to type their address in! > The angel would like to stay, awaken the dead, and make whole what has been smashed. But a storm is blowing from Paradise; it has got caught in his wings with such violence that the angel can no longer close them. The storm irresistibly propels him into the future to which his back is turned, while the pile of debris before him grows skyward. This storm is what we call progress.
- ljosifov 1y ago
  Well Yes and No. Funny you mention the 80s/90s. I grew up in the pre-Internet world. I remember home computers, then PC-s, then modems to access BBS-es, then FIDO, uucp email, academic Internet and then the private commercial Internet after 1990. Some parts of the privacy agenda I'm strongly pro-privacy, the more the better. I don't want encryption broken. The UK gov (I live in the UK) are being morons for that, forever trying that play. Atm there is at least part of the US admin to push back on that. I don't like UK Parliament forcing the online ID on me. I'm pro- having private citizens having private keys on un-snoop-able dongle devices.
827a 1y ago
Its incredible to me how seriously people can hold an opinion they've so clearly critically interrogated so little.
- soraminazuki 1y ago
  It makes sense when you see it as indoctrination than a mere opinion. Quashing critical thinking is the point. How else can you convince people to work against their own interests?
  - ljosifov 1y ago
    I put it to you - consider that you maybe wrong. That I indeed know what's best for me. The same way my default is that you know what's best for you. "Critical thinking" and "indoctrination" - you are on path to the dark side there. I grew up in a socialist/communist country. One of the ways in which vast majority of the population were oppressed, mis-treated etc or worse, was by them being denied agency and capability for critical thinking, for recognising their own interests, by a mechanism called "false consciousness". The ideas you expressed in your comment are of similar kind.
    - soraminazuki 1y ago
      Says the person advocating for companies to get rid of consent, the bare minimum they can do when screwing over people for profit. That's not deciding what's best for you. That's you unilaterally deciding that no one deserves consumer protection. You are trying to force on everyone what 96% of people are opposed to [1]. So don't you dare pull off that DARVO nonsense and accuse me of being an oppressive dictator. Also in what universe are utter fantasies like "'no one wants to share their data' is just assumed" or "the defaults are always 'deny everything'" true? Tech companies are bypassing user consent all [2] the [3] time [4]. [1]: https://arstechnica.com/gadgets/2021/05/96-of-us-users-opt-out-of-app-tracking-in-ios-14-5-analytics-find/ https://arstechnica.com/gadgets/2021/05/96-of-us-users-opt-o... [2]: https://hn.algolia.com/?q=opt%20out https://hn.algolia.com/?q=opt%20out [3]: https://hn.algolia.com/?q=opt%20in https://hn.algolia.com/?q=opt%20in [4]: https://hn.algolia.com/?q=consent https://hn.algolia.com/?q=consent
Razengan 1y ago
> I'm not aware of any major disasters. Oh boy. Did you somehow miss all the news about data leaks and password dumps etc. being sold on the "dark" web and shit? Would you mind if I followed you around and noted everything you do and constantly demanded your attention? The shit done by corporations is akin to a clingy stalker and would be absolutely despised if it was an individual person doing something like that. As for benefits, which?? In my entire life I have never seen an ad for anything (that I did not already know about via other means) that made me want to look up the product, let alone buy it. Nor do I know anyone who did. In fact, it turns me off from a product if its ad appears too frequently. Google etc. and various storefronts also almost never recommend me anything that actually matches my interests, beyond just a shallow word similarity, in fact they forcibly shove completely unrelated shit into my searches cause they were paid to. Like searching for RPGs and seeing Candy f'ing Crush. ---- You know what though, I kinda agree with the potential intent behind your charade: Yes, LET ME TELL YOU ABOUT ME. I will gladly TELL companies EXACTLY what I like, and I WANT you to use that. Show me other shit that is actually relevant to MY interests instead of the interests of whomever paid you to shove their shit into my face. ASK! DON'T SPY! Because you can't ever get it right anyway!
calmbonsai 1y ago
I don't think you understand how...humanity works?! Is this deliberate parody? Abuse of medical data is just the tip of the iceberg here and, at least in the states, privatized healthcare presents all sorts of for-profit pricing abuse scenarios let alone nasty scenarios for social coercion.
- ljosifov 1y ago
  You know little about me, so it's better to assume less, no? My personal experience with medical data specifically is, that I would have been harmed by obstacles to data sharing that the UK medical system has in place, having not been familiar with computers and tech enough to anticipate the ways lack of data sharing will lead to outcomes undesirable to me. I wrote about that in a comment here https://news.ycombinator.com/item?id=45067219 https://news.ycombinator.com/item?id=45067219
  - calmbonsai 1y ago
    I read you comment and I'm sorry you had to jump through all the hoops just to get copies of your medical records. I dealt with some of that while being a foreign national working in Düsseldorf a few years back. Medical care is definitely screwed up in the states, but getting my basic test results and emailing my doctor has always been a straightforward and rapid comms loop.
bgwalter 1y ago
I realize this might be satire. If not, you are using the same aggressive strategy of turning the tables as Palantir: https://www.theguardian.com/technology/2025/jul/08/palantir-technology-uk-doctors-patient-nhs-data https://www.theguardian.com/technology/2025/jul/08/palantir-... Most people do want to deny their data, as we have recently seen in various DOGE backlashes.
- ljosifov 1y ago
  It's not a satire, you can check mu comments on this topic easily. I dispute 'most people'. Revealed preferences of most people are that they value their data privacy very cheaply, almost zero. Even one click extra to share their data less, is one click too many, an effort too high - for most people. This is their real, observed behaviour. I think our current predicament is the case of "public lies, private truths." A small cadre of vocal proponents of a particular view, established "the ground truth to what is desirable". (in this case - maximum privacy, ideally zero information sharing) The public goes with it in words, pays lip service - but in reality behaves different, even opposite to what they say they desire. And even if 'most people' wanted what you say they do, I still think the companies could and should accommodate a minority group like myself that want otherwise to what 'most people' want. I don't think the will of the majority is the highest ideal, so high as to trump what I personally want.
Gud 1y ago
Have you considered the drawbacks of sharing your data to the most unscrupulous people on this planet?
- ljosifov 1y ago
  I already share lots of my data with Google. I have Gmail where a lot of my online life is reflected. I have Photos, Gmaps, Gdrive. Also Google knows about my YouTube viewing, my Android phone use. So no matter what I say - with my actions, my revealed preference is - that I trust Google. So far - Google have not betrayed my trust, afaics. So I actually want for Google to adapt Gemini to me, either via the context, or even with a thin layer of LoRA. If Google treats me like a complete stranger it knows nothing about, then Google, and plenty of other people, make use of my data, but I, the creator (and nominal owner) of my data - don't benefit from their knowledge of me?? That sounds the worst of the possible options to me.
AlexandrB 1y ago
I think I'd have more understanding for this position if I thought that these companies were still fundamentally interested in serving their users. They are not. Any information you provide is more likely to be used against your interests (even if that's "just" targeting you with some ads for a scammy product) than for your benefit. Basically all AI companies are fruit from the same VC-poisoned tree and I expect these products will get worse and more user-hostile as they try to monetize. We're currently living in the "MoviePass"[1] era of AI where users are being heavily subsidized to try to gain market share. It will not last and the potential for abuse is enormous. [1] https://en.wikipedia.org/wiki/MoviePass https://en.wikipedia.org/wiki/MoviePass
- ljosifov 1y ago
  Whether Google is interested in serving me or not, is not only untestable (i.e. what counts as 'Google', 'interested', and 'serving' there - one could argue to end of time) - but besides the point. I want to be able to tell Google "My home is XYZ", and for Google to use that information about me in all of Google ecosystem. When I talk to Gemini it should know what/where "LJ home" is, when I write in Gdoc it should know my home address (so to insert it if I want it), ditto for Gmail, when I search in Google photos "photos taken at home" it should also know what "home" is for me. Atm Google vaguely knows, and uses that for Ads targeting, sometimes. Most of the time - the targeting is bad, very low quality slop. To the level of "he bought a mattress yesterday, will keep buying mattresses in the next 30-60 days". I have the impression that we ended up in the worst case scenario. People I don't want to have my data, have access to it. People I do want to have my data, are afraid to touch it, and use it - yes! - for theirs, but also for my benefit too. The current predicament seems to me the case of "public lies, private truths." A small cadre of vocal proponents of a particular view, established "the ground truth to what is desirable". (in this case - maximum privacy, ideally zero information sharing) The public goes with it in words, pays lip service, while in deeds, the revealed preferences show, they value their data privacy very cheaply, almost zero. Even one click extra, to share their data less, is one click too many, effort too high, for most people. Again - these are revealed preferences, for people keep lying when asked. It's not even the case of "you are lying to me" - no, it's more like "you are lying to yourself." The conventional opinion is that the power imbalance coming from the information imbalance (state/business know a lot about me; I know little about them) is that us citizens and consumers should reduce our "information surface" towards them. And address the imbalance that way. But. There exists another, often unmentioned option. And that option is for state/business to open up, to increase their "information surface" towards us, their citizens/consumers. That will also achieve information (and one hopes power) rebalance. Yes there is extra work on part of state/business to open their data to us. But it's worth it. The more advanced the society, the more coordination it needs to achieve the right cooperation-competition balance in the interactions between ever greater numbers of people. There is an old book "Data For the People" by an early AI pioneer and Amazon CTO Andreas Weigend. Afaics it well describes the world we live in, and also are likely to live even more in the future.
mrbombastic 1y ago
You should read up on the Dutch Civil Registry and the holocaust in the Netherlands and reevaluate if you are serious. I would love to live in a world where everyone had good intentions and the powers that be wouldn’t abuse data to their ends, we will never live in that world.
soraminazuki 1y ago
You can train commercial AI with your data right now without screwing over everyone else on the planet. It's easy, just publish your entire trove of personal data on a website and AI crawlers will happily gobble it all up. You can publish your name, home address, work, government-issued ID, financial transactions, chats, browser history, location history, surveillance footage of your home, all for free. So what are you waiting for? Just do it now if you want to share data that badly, there's no need to wait for the approval of "privacy maximalists."
- ljosifov 1y ago
  I'm not 'screwing' anyone. I'm saying - the same way people don't want to have their data used, I DO want my data used. I'm not saying they use YOUR data. I'm saying they use MY data. Likewise, I'm not telling you what you publish. In the same manner, I dislike it you telling me that I publish. So on > name, home address, work, government-issued ID, financial transactions, chats, browser history, location history, surveillance footage of your home, all for free. It's up to me, not you, what I decided to publish or not. Fwiw, I already publish > name, home address, work, willingly. My name is public (how can it be otherwise?) and home address is in the electoral register that is public. My work info is in the UK companies register, available for reading to all, on the web I publish to selected parties > government-issued ID even if I don't want it. (we don't have specific 'government-issued ID' for ID purposes like in the Continent; my driving licence is used for that) I did it yesterday, because UK gov requires companies to collect that information. Yesterday I had to give two photos of myself to an online pharmacy shop because UK gov mandates that they collect that info - and I disliked that very much. The online pharmacy is not the one pushing for that data, its the UK gov forcing that one them via regulation of how that particular medication is to be sold online. I don't want to publish and don't publish > financial transactions, chats, browser history, location history, surveillance footage of your home ...and don't understand where this gale to tell perfect strangers what they should do with their lives comes from?? I don't tell you what you should or should not publish? Ditto for the pricing > all for free. Up to me to decide. I don't tell you what you do - so you don't tell me what I do, pretty please. I am not waiting on "privacy maximalists." I try to share my data for some purpose I need. I loathe 'privacy maximalist' in the UK for having influenced the current laws of the land in a way to cater for their obsessions and ignore my desires. I think I'm in majority, not minority. Our current predicament seems to me the case of "public lies, private truths." A small cadre of vocal proponents of a particular view, established "the ground truth to what is desirable". (in this case - maximum privacy, ideally zero information sharing) The public goes with it in words, pays lip service, while in deeds, the revealed preferences show that we value our data privacy very little - almost zero. Even one click extra to share our data less, is one click too many, an effort too high for most people. Again - these are revealed preferences, for people keep lying when asked. It's not even the case of "you are lying to me" - no, it's more like "you are lying to yourself."

12ian34 1y ago

not remotely worried about leaks, hacks, or sinister usage of your data?

londons_explore 1y ago
I would far prefer the service use my data to work better and take a few privacy risks. People die all the time from cancer or car accidents. People very rarely die from data leaks. Some countries like Sweden make people's private financial data public information - and yet their people seem happier than ever. Perhaps privacy isn't as important as we think for a good society.
- soiltype 1y ago
  public/private isn't a binary, it's a spectrum. we Americans mostly sit in the shithole middle ground where our data is widely disseminated among private, for-profit actors, for the explicit purpose of being used to manipulate us, but it's mostly not available to us, creating an assymmetric power balance.
  - ljosifov 1y ago
    I agree with your stance there. Further - the conventional opinion is that the power imbalance coming from the information imbalance (state/business know a lot about me; I know little about them) is that us citizens and consumers should reduce our "information surface" towards them. And address the imbalance that way. But. There exists another, often unmentioned option. And that option is for state/business to open up, to increase their "information surface" towards us, their citizens/consumers. That will also achieve information (and one hopes power) rebalance. Every time it's actually measured, how much value we put on our privacy, when we have to weight privacy against convenience and other gains from more data sharing, the revealed preference is close to zero. The revealed preference is that we put the value of our privacy close to zero, despite us forever saying otherwise. (that we value privacy very very much; seems - "it ain't so") So the option of state/business revealing more data to us citizens/consumers, is actually more realistic. Yes there is extra work on part of state/business to open their data to us. But it's worth it. The more advanced the society, the more coordination it needs to achieve the right cooperation-competition balance in the interactions between ever greater numbers of people. There is an old book "Data For the People" by an early AI pioneer and Amazon CTO Andreas Weigend. Afaics it well describes the world we live in, and also are likely to live even more in the future.
- 12ian34 1y ago
  Sweden is a very poor example, all that is public is personal taxable income. That's it. You're comparing apples to oranges. And how is your home address, and AI chatbot history going to cure cancer?
- Gud 1y ago
  That financial data is very limited. Would it be just as acceptable if these companies knew where and what you purchased?
ljosifov 1y ago
If they leaked bank accounts numbers, or private keys - I would be worried. That has not happened in the past. About myself personally - my Name Surname is googleable, I'm on the open electoral register, so my address is not a secret, my company information is also open in the companies register, I have a a personal website I have put up willingly and share information about myself there. Training models on my data doesn't seem riskier than that. Yeah, I know I'd be safer if I was completely dark, opaque to the world. I like the openness though. I also think my life has been enriched in infinitely many ways by people sharing parts of their lives via their data with me. So it would be mildly sociopathic of me, if I didn't do similar back to the world, to some extent.
- 12ian34 1y ago
  So you are projecting sociopathy on those that choose to keep their lives more private than you? Like you said, basic personal details are essentially public knowledge anyway. Where do you draw the line personally on what should be private?
  - ljosifov 1y ago
    Not at all, on the contrary, I chose my words carefully ("mildly sociopathic OF ME") as to avoid casting shade on others. Saying "this is how I feel", so to preclude judging others. Everyone makes their own choices, and that's fine. Boundaries - yes sure they exist. I don't have my photo albums open to the world. I don't share info about family and friends - I know people by default don't want to share information about them, and I try to respect that. Don't share anything on Facebook, where plenty share, for example. At the same time, I find obstacles to data sharing codified in the UK law frustrating. With the UK NHS. 1) Can't email my GP to pass information back-and-forth - GP withholds their email contact; 2) MRI scan private hospital makes me jump 10 hops before sharing my data with me; 3) Blood tests scheduling can't tell me back that schedule for a date failed, apparently it's too much for them to have my email address on record; 4) Can't volunteer my data to benefit R&D in NHS. ("here are - my lab works reports, 100 GB of my DNA paid for by myself, my medical histories - take them all in, use them as you please...") In all cases vague mutterings of "data protection... GDPR..." have been relayed back as "reasons". I take it's mostly B/S. They could work around if they wanted to. But there is a kernel of truth - it's easier for them to not try share, so it's used as a cover leaf. (in the worst case - an alibi for laziness.) I'm for having power to share, or not share, what I want. With Google - I do want them to know about myself and use that for my (and theirs) benefit. With the UK gov (trying to break encryption) - I don't want them to be able to read my WhatsApp-s. I detest UK gov for effectively forcing me (by forcing the online pharmacy) to take a photos of myself (face, figure) in order to buy online Wegovy earlier today.
ljosifov 1y ago
I'm worried, it's not like I don't care. For example, I'm worried that Google is such a huge ginormous target, that at some point their Gmail will be broken. At the same time, there are benefits to sharing data. There are benefits to me, in Google using the information it has on my, to make my life easier. In this case, I judge that Gemini using my data to train, is a low extra risk for me. Compared to all other risks I take, for doing things in public. Including writing this on public forums, as you do too. In general, I find the ongoing public scare about sharing data, to be anti-thesis to the original spirit of the Net, that was all about sharing data. Originally, we were delighted to connect to perfect strangers on the other side of the world. That we would never have gotten to communicate with otherwise. I accept there might have been an element of self-selection there, that aided that view: people one'd communicate with, although maybe from a different culture, would be from similar niche sub-culture of people messing with computers and looking forward to communication, having a favourable view of that.
- 12ian34 1y ago
  > the ongoing public scare about sharing data I think this might be a bit of a social bubble thing - I think it isn't a forefront concern for the vast majority of people.
  - ljosifov 1y ago
    I think you are correct there - the majority of the public don't care. They just try to get about doing their daily business and act the best they can under circumstances. So we just click "Accept" to any popup banner make it go away, accept "All cookies" 100 times every day, use Google mail/map/photos/drive and that all involves giving away data, even if in words we say we don't want to give data. So yes obviously the public by necessity act in a rational way, doing cost-benefit analysis. While a cadre of privacy obsessives have made my life worse by lobbying and having their bad ideas codified in the UL laws. Wrote about my experience in the UK medical systems here https://news.ycombinator.com/item?id=45066321 https://news.ycombinator.com/item?id=45066321

j4hdufd8 1y ago

> But there are people out there (myself) that are on the opposite end of the spectrum, and we are mostly ignored by the companies. Companies just assume people only ever want to deny them their data. What? I think you're exactly the kind of person that companies pay attention to, and why they pull moves like this

ljosifov 1y ago
My experience in the UK medical systems has been the opposite - wrote here https://news.ycombinator.com/item?id=45066321 https://news.ycombinator.com/item?id=45066321 Google knows what "Home" is for me only in Gmaps, because I went out of my way (put a Label etc) to tell it. I want to be able to tell Google "My home is XYZ", and for Google to use that information about me in all of Google ecosystem. When I talk to Gemini it should know what/where "LJ home" is, when I write in Gdoc it should know my home address (so to insert it if I want it), ditto for Gmail, when I search in Google photos "photos taken at home" it should also know what "home" is for me. I have the impression that we ended up in the worst case scenario. People I don't want to have my data, have access to it. People I do want to have my data, are afraid to touch it, and use it - yes! - for theirs, but also for my benefit too.

blipmusic 1y ago

My life does in fact have priorities above ”LLMs should work a bit better”.

j4hdufd8 1y ago

Are you okay getting ads for shit holistic medication because you had a mental health conversation with AI?

imiric 1y ago

What a ridiculous stance. Do you lock your front door, or use passwords on any of your accounts? Because what you're essentially saying is that you're OK with strangers having access to your personal information. That's beyond the already flawed "I have nothing to hide" argument.

JumpCrisscross 1y ago
> Do you lock your front door In trusted neighborhoods? No. But that respect goes both ways.

franga2000 1y ago

Try living in a place with privatised health insurance and you'll quickly see why medical data is some of the most important to keep private.

behnamoh 1y ago

Are you trolling us or do you live in a hypothetical world where companies have our best interests in heart?

beepbooptheory 1y ago

This may very well be a rational stance, but either way, wish one could somehow teleport this sentiment to the Cypherpunk mailing list in the 80s/90s. Of all the things they projected, concocted, fought for.. Nothing could truly prepare them for this kind of thing: the final victory of the product over the people, the happy acceptance of surveillance. They were all imagining terrible dystopias garnered from state violence and repression, never could they begin to imagine it could all transpire anyway because people like not having to type their address in! > The angel would like to stay, awaken the dead, and make whole what has been smashed. But a storm is blowing from Paradise; it has got caught in his wings with such violence that the angel can no longer close them. The storm irresistibly propels him into the future to which his back is turned, while the pile of debris before him grows skyward. This storm is what we call progress.

ljosifov 1y ago
Well Yes and No. Funny you mention the 80s/90s. I grew up in the pre-Internet world. I remember home computers, then PC-s, then modems to access BBS-es, then FIDO, uucp email, academic Internet and then the private commercial Internet after 1990. Some parts of the privacy agenda I'm strongly pro-privacy, the more the better. I don't want encryption broken. The UK gov (I live in the UK) are being morons for that, forever trying that play. Atm there is at least part of the US admin to push back on that. I don't like UK Parliament forcing the online ID on me. I'm pro- having private citizens having private keys on un-snoop-able dongle devices.

827a 1y ago

Its incredible to me how seriously people can hold an opinion they've so clearly critically interrogated so little.

soraminazuki 1y ago
It makes sense when you see it as indoctrination than a mere opinion. Quashing critical thinking is the point. How else can you convince people to work against their own interests?
- ljosifov 1y ago
  I put it to you - consider that you maybe wrong. That I indeed know what's best for me. The same way my default is that you know what's best for you. "Critical thinking" and "indoctrination" - you are on path to the dark side there. I grew up in a socialist/communist country. One of the ways in which vast majority of the population were oppressed, mis-treated etc or worse, was by them being denied agency and capability for critical thinking, for recognising their own interests, by a mechanism called "false consciousness". The ideas you expressed in your comment are of similar kind.
  - soraminazuki 1y ago
    Says the person advocating for companies to get rid of consent, the bare minimum they can do when screwing over people for profit. That's not deciding what's best for you. That's you unilaterally deciding that no one deserves consumer protection. You are trying to force on everyone what 96% of people are opposed to [1]. So don't you dare pull off that DARVO nonsense and accuse me of being an oppressive dictator. Also in what universe are utter fantasies like "'no one wants to share their data' is just assumed" or "the defaults are always 'deny everything'" true? Tech companies are bypassing user consent all [2] the [3] time [4]. [1]: https://arstechnica.com/gadgets/2021/05/96-of-us-users-opt-out-of-app-tracking-in-ios-14-5-analytics-find/ https://arstechnica.com/gadgets/2021/05/96-of-us-users-opt-o... [2]: https://hn.algolia.com/?q=opt%20out https://hn.algolia.com/?q=opt%20out [3]: https://hn.algolia.com/?q=opt%20in https://hn.algolia.com/?q=opt%20in [4]: https://hn.algolia.com/?q=consent https://hn.algolia.com/?q=consent

Razengan 1y ago

> I'm not aware of any major disasters. Oh boy. Did you somehow miss all the news about data leaks and password dumps etc. being sold on the "dark" web and shit? Would you mind if I followed you around and noted everything you do and constantly demanded your attention? The shit done by corporations is akin to a clingy stalker and would be absolutely despised if it was an individual person doing something like that. As for benefits, which?? In my entire life I have never seen an ad for anything (that I did not already know about via other means) that made me want to look up the product, let alone buy it. Nor do I know anyone who did. In fact, it turns me off from a product if its ad appears too frequently. Google etc. and various storefronts also almost never recommend me anything that actually matches my interests, beyond just a shallow word similarity, in fact they forcibly shove completely unrelated shit into my searches cause they were paid to. Like searching for RPGs and seeing Candy f'ing Crush. ---- You know what though, I kinda agree with the potential intent behind your charade: Yes, LET ME TELL YOU ABOUT ME. I will gladly TELL companies EXACTLY what I like, and I WANT you to use that. Show me other shit that is actually relevant to MY interests instead of the interests of whomever paid you to shove their shit into my face. ASK! DON'T SPY! Because you can't ever get it right anyway!

calmbonsai 1y ago

I don't think you understand how...humanity works?! Is this deliberate parody? Abuse of medical data is just the tip of the iceberg here and, at least in the states, privatized healthcare presents all sorts of for-profit pricing abuse scenarios let alone nasty scenarios for social coercion.

ljosifov 1y ago
You know little about me, so it's better to assume less, no? My personal experience with medical data specifically is, that I would have been harmed by obstacles to data sharing that the UK medical system has in place, having not been familiar with computers and tech enough to anticipate the ways lack of data sharing will lead to outcomes undesirable to me. I wrote about that in a comment here https://news.ycombinator.com/item?id=45067219 https://news.ycombinator.com/item?id=45067219
- calmbonsai 1y ago
  I read you comment and I'm sorry you had to jump through all the hoops just to get copies of your medical records. I dealt with some of that while being a foreign national working in Düsseldorf a few years back. Medical care is definitely screwed up in the states, but getting my basic test results and emailing my doctor has always been a straightforward and rapid comms loop.

bgwalter 1y ago

I realize this might be satire. If not, you are using the same aggressive strategy of turning the tables as Palantir: https://www.theguardian.com/technology/2025/jul/08/palantir-technology-uk-doctors-patient-nhs-data https://www.theguardian.com/technology/2025/jul/08/palantir-... Most people do want to deny their data, as we have recently seen in various DOGE backlashes.

ljosifov 1y ago
It's not a satire, you can check mu comments on this topic easily. I dispute 'most people'. Revealed preferences of most people are that they value their data privacy very cheaply, almost zero. Even one click extra to share their data less, is one click too many, an effort too high - for most people. This is their real, observed behaviour. I think our current predicament is the case of "public lies, private truths." A small cadre of vocal proponents of a particular view, established "the ground truth to what is desirable". (in this case - maximum privacy, ideally zero information sharing) The public goes with it in words, pays lip service - but in reality behaves different, even opposite to what they say they desire. And even if 'most people' wanted what you say they do, I still think the companies could and should accommodate a minority group like myself that want otherwise to what 'most people' want. I don't think the will of the majority is the highest ideal, so high as to trump what I personally want.

Gud 1y ago

Have you considered the drawbacks of sharing your data to the most unscrupulous people on this planet?

ljosifov 1y ago
I already share lots of my data with Google. I have Gmail where a lot of my online life is reflected. I have Photos, Gmaps, Gdrive. Also Google knows about my YouTube viewing, my Android phone use. So no matter what I say - with my actions, my revealed preference is - that I trust Google. So far - Google have not betrayed my trust, afaics. So I actually want for Google to adapt Gemini to me, either via the context, or even with a thin layer of LoRA. If Google treats me like a complete stranger it knows nothing about, then Google, and plenty of other people, make use of my data, but I, the creator (and nominal owner) of my data - don't benefit from their knowledge of me?? That sounds the worst of the possible options to me.

AlexandrB 1y ago

I think I'd have more understanding for this position if I thought that these companies were still fundamentally interested in serving their users. They are not. Any information you provide is more likely to be used against your interests (even if that's "just" targeting you with some ads for a scammy product) than for your benefit. Basically all AI companies are fruit from the same VC-poisoned tree and I expect these products will get worse and more user-hostile as they try to monetize. We're currently living in the "MoviePass"[1] era of AI where users are being heavily subsidized to try to gain market share. It will not last and the potential for abuse is enormous. [1] https://en.wikipedia.org/wiki/MoviePass https://en.wikipedia.org/wiki/MoviePass

ljosifov 1y ago
Whether Google is interested in serving me or not, is not only untestable (i.e. what counts as 'Google', 'interested', and 'serving' there - one could argue to end of time) - but besides the point. I want to be able to tell Google "My home is XYZ", and for Google to use that information about me in all of Google ecosystem. When I talk to Gemini it should know what/where "LJ home" is, when I write in Gdoc it should know my home address (so to insert it if I want it), ditto for Gmail, when I search in Google photos "photos taken at home" it should also know what "home" is for me. Atm Google vaguely knows, and uses that for Ads targeting, sometimes. Most of the time - the targeting is bad, very low quality slop. To the level of "he bought a mattress yesterday, will keep buying mattresses in the next 30-60 days". I have the impression that we ended up in the worst case scenario. People I don't want to have my data, have access to it. People I do want to have my data, are afraid to touch it, and use it - yes! - for theirs, but also for my benefit too. The current predicament seems to me the case of "public lies, private truths." A small cadre of vocal proponents of a particular view, established "the ground truth to what is desirable". (in this case - maximum privacy, ideally zero information sharing) The public goes with it in words, pays lip service, while in deeds, the revealed preferences show, they value their data privacy very cheaply, almost zero. Even one click extra, to share their data less, is one click too many, effort too high, for most people. Again - these are revealed preferences, for people keep lying when asked. It's not even the case of "you are lying to me" - no, it's more like "you are lying to yourself." The conventional opinion is that the power imbalance coming from the information imbalance (state/business know a lot about me; I know little about them) is that us citizens and consumers should reduce our "information surface" towards them. And address the imbalance that way. But. There exists another, often unmentioned option. And that option is for state/business to open up, to increase their "information surface" towards us, their citizens/consumers. That will also achieve information (and one hopes power) rebalance. Yes there is extra work on part of state/business to open their data to us. But it's worth it. The more advanced the society, the more coordination it needs to achieve the right cooperation-competition balance in the interactions between ever greater numbers of people. There is an old book "Data For the People" by an early AI pioneer and Amazon CTO Andreas Weigend. Afaics it well describes the world we live in, and also are likely to live even more in the future.

mrbombastic 1y ago

You should read up on the Dutch Civil Registry and the holocaust in the Netherlands and reevaluate if you are serious. I would love to live in a world where everyone had good intentions and the powers that be wouldn’t abuse data to their ends, we will never live in that world.

soraminazuki 1y ago

You can train commercial AI with your data right now without screwing over everyone else on the planet. It's easy, just publish your entire trove of personal data on a website and AI crawlers will happily gobble it all up. You can publish your name, home address, work, government-issued ID, financial transactions, chats, browser history, location history, surveillance footage of your home, all for free. So what are you waiting for? Just do it now if you want to share data that badly, there's no need to wait for the approval of "privacy maximalists."

ljosifov 1y ago
I'm not 'screwing' anyone. I'm saying - the same way people don't want to have their data used, I DO want my data used. I'm not saying they use YOUR data. I'm saying they use MY data. Likewise, I'm not telling you what you publish. In the same manner, I dislike it you telling me that I publish. So on > name, home address, work, government-issued ID, financial transactions, chats, browser history, location history, surveillance footage of your home, all for free. It's up to me, not you, what I decided to publish or not. Fwiw, I already publish > name, home address, work, willingly. My name is public (how can it be otherwise?) and home address is in the electoral register that is public. My work info is in the UK companies register, available for reading to all, on the web I publish to selected parties > government-issued ID even if I don't want it. (we don't have specific 'government-issued ID' for ID purposes like in the Continent; my driving licence is used for that) I did it yesterday, because UK gov requires companies to collect that information. Yesterday I had to give two photos of myself to an online pharmacy shop because UK gov mandates that they collect that info - and I disliked that very much. The online pharmacy is not the one pushing for that data, its the UK gov forcing that one them via regulation of how that particular medication is to be sold online. I don't want to publish and don't publish > financial transactions, chats, browser history, location history, surveillance footage of your home ...and don't understand where this gale to tell perfect strangers what they should do with their lives comes from?? I don't tell you what you should or should not publish? Ditto for the pricing > all for free. Up to me to decide. I don't tell you what you do - so you don't tell me what I do, pretty please. I am not waiting on "privacy maximalists." I try to share my data for some purpose I need. I loathe 'privacy maximalist' in the UK for having influenced the current laws of the land in a way to cater for their obsessions and ignore my desires. I think I'm in majority, not minority. Our current predicament seems to me the case of "public lies, private truths." A small cadre of vocal proponents of a particular view, established "the ground truth to what is desirable". (in this case - maximum privacy, ideally zero information sharing) The public goes with it in words, pays lip service, while in deeds, the revealed preferences show that we value our data privacy very little - almost zero. Even one click extra to share our data less, is one click too many, an effort too high for most people. Again - these are revealed preferences, for people keep lying when asked. It's not even the case of "you are lying to me" - no, it's more like "you are lying to yourself."