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Software that supports your body should always respect your freedom
- vGPU 3y ago> users of the proprietary software app LibreLink Bit of a misnomer.
- throwaway128128 3y agoIt keeps happening. From the very beginning "free" software has been plagued with overloaded language.
- Hackbraten 3y agoWhy? The vendor is free to do whatever it wants with it, right? /s
- layer8 3y agoOpenAI
- FireBeyond 3y agoI think the FSF's argument over medical software is quite sound, but this point was a little pouty for my liking. The whole world doesn't revolve around the FSF's definitions of free/open/libre, and LibreLink is related to the FreeStyle Libre devices, that aim (marketing) at being something "so you can get back to the things that matter most".
- deleted 3y ago[deleted]
- mbakke 3y agoGreat article. Real life horror stories of life-critical software gore, with some good news at the end. It should be illegal to sell software that someones life depends upon without giving the user the right to inspect and modify the code.
- 7e 3y agoQuality of life critical software should be ensured by FDA certification. Homebrew modifications of that software, even in the name of “freedom”, risks the patient’s life and health and should be illegal if uncertified.
- hobs 3y agoTo distribute? Sure. To make changes to your out of support cyber-eyeball? Nah.
- Kim_Bruning 3y agoI think this might be a cultural thing. In some (western) countries, your body is your personal private property, and you have the freedom and ultimate authority over how to use and abuse it, or anything on or in it. (you are still advised to treat your most precious property wisely, obviously) In other (western) countries/subcommunities people feel that obligations to your community are stronger. People from these different cultures can get into some pretty hefty discussions when it comes to things like abortion, drugs, euthansia, or -here- implants.
- eikenberry 3y agoSo like suicide, drugs and other and other cases where we are denied dominion over ourselves for our own good? IE. Your life and body are not yours, they belong to society and you only get limited access.
- chpatrick 3y agoSociety doesn't have to give you the rope to hang yourself.
- eikenberry 3y agoI disagree or rather yes, it does have the responsibility to provide you a rope. It is up to you whether you hang yourself or not.
- Kim_Bruning 3y agoSoftware that your life depends on should be required to respect the four software freedoms (run, study, copy, modify). If the four freedoms don't apply in the context of your own bodily autonomy, where else could they be more important? (Consider the inverse: Parts of your own body are not your property but are merely licensed to you, and the license can be modified or withdrawn at the pleasure of the licensor) Legislation might be required. (edit: this would not be without precedent. Copyright and Patents are very limited when it comes to life essentials in general, such as recipes for food or designs for clothing.)
- AndrewKemendo 3y ago> If the four freedoms don't apply in the context of your own bodily autonomy, where else could they be more important? I’ve got bad news unfortunately. Bodily autonomy has never really been all that free in practice for the last few thousand years at least. We’re making some progress at least.
- worik 3y ago> Bodily autonomy has never really been all that free in practice for the last few thousand years at least. We’re making some progress at least. In the context of the repeal of Roe V Wade....
- notjoemama 3y agoOr the ruling in the first place…
- isbwkisbakadqv 3y agoRight to someone else’s blood supply via placenta?
- leereeves 3y agoThe rules are different for parents. It's almost universally agreed that (at least once born) a child's needs are more important than parents' freedom.
- account-5 3y agoGod forbid I ever need to rely on software to live. But if I do you can guarantee I won't have anything connected to the internet that I need a smartphone to use!
- Kim_Bruning 3y agoAt that point you may have no choice if you want to live.
- Hackbraten 3y agoIf I'm ever going to find myself at a point where my body needs software to survive, then you bet that I'm going to hire someone to liberate it for me. If I can't find anyone willing to take the risk, I'd take a shot in reverse engineering the thing myself.
- mtlmtlmtlmtl 3y agoThen I'll let myself die as a protest. I realise that's not a normal or even reasonable response to the predicament, but I'll never have kids and I've never been very attached to my life anyway.
- wolverine876 3y agoI think you mean software controlling medical devices, but you do rely on software to live when you drive, ride a plane, cross the street (crosswalk lights), when the train with poisonous whatever rolls through town, etc.
- akokanka 3y agoWe are heading to worst possible cyberpunk future.
- bowsamic 3y agoI don't have anything else to add to this other than: how absolutely horrible.
- politelemon 3y agoA lot of this does make sense, and I think there's still ought to be more in the messaging. The medical data as well needs to be analogously free, or rather, wholly private to the individual. No organization should be the arbiters of our medical information. But the sad news is, we carry around with us portable surveillance circlets which have the ability to access our medical conditions. We give it information voluntarily, and through occasional advertorials, this practice is becoming more normalized and accepted. I'm not convinced that the convenience outweighs the trouble this is going to bring.
- analogj 3y agoI'm actually working on an open-source Personal Health Record (PHR) app called Fasten Health - https://github.com/fastenhealth/fasten-onprem https://github.com/fastenhealth/fasten-onprem It allows patients to pull their complete medical history from their various healthcare institutions, and store it locally without having to worry about some corporation monetizing and data-mining their health record
- dmytroi 3y ago100% agree for "read only" software, like scanning, diagnostics, etc. Control software is much more involved topic, let me illustrate it with a scenario: one family member is non-techy but has an insulin pump, another family member is techy and likes to hack around, they made a change to the insulin pump software to "improve it", but by accident the change triggered insulin overdose at night during sleep and family member died. We have rules and regulations not just to have rules and regulations, we have rules and regulations because they are written in blood. While advocating for ability to freely modifying any life dependant control software is a noble goal, in my opinion it's the wrong end to approach it, instead it would be more constructive if we as computer science industry figure out ways how to make software such as we don't kill people, how to "certify" it in self service fashion (validation passed == no-one will die), etc, it's no trivial and it feels this particular part of our industry is not as developed/main stream as compared to something like civil engineering. If we have easy ways to ensure that modifying software will not lead to death then it will be easier to change the legislation to enforce this freedom.
- cbrugs 3y agoI agree with it being the wrong way to go about it- I think the article fails to recognize that relying on the software being free isn't a solid enough certification of the software being appropriately safe to control a person's health. There has to be some other safeguard put in place- I'm not sure if it's legislation, but allowing a software update to break an app used by the elderly is unacceptable.
- Kim_Bruning 3y agoSoftware continues to "eat the world". Given that, having medical software be FLOSS certainly seems like it's a necessary step. Whether that alone is also sufficient is something that might warrant further debate. Eg. in the opposing quadrant: maybe the insulin pump has a bug, but the new fix doesn't get certified in time and now the family member dies while their kin stands by whilst wringing their hands. This bears balancing. I think -partially- this would fall under a patient's right[1] to choose an alternative treatment option, when presented with the pros and cons. A patient should be allowed to take considered risks. [1] https://en.wikipedia.org/wiki/Patients'_rights https://en.wikipedia.org/wiki/Patients'_rights
- graphe 3y agoI don't understand what freedom stands for anymore. I don't trust the FSF after they started grandstanding on topics that made no sense. Apple making an update that breaks apps isn't the fault of the app developers, or the app. The measures they suggested are completely useless if nobody wants to update or make a gpl 3 or even a horrible gpl 2 app. Suppose they do, they're supposed to pay the apple fee every year and "sell" it for free? I'm not sure what the article wants besides bad press for companies that went bankrupt?
- nulld3v 3y agoYou know you can still sell a piece of software even if it is open source? Especially on iOS, you can't get software onto your phone unless it is published on the app store so just like you said, whoever is paying that publishing fee is going to charge users to install the app. Or you don't even have to sell the software at all. If I had a piece of software that I needed to live, if it was OSS at least I could pay a dev to maintain it so I don't die...
- thfuran 3y ago>Two months later, with Apple's update to iOS 17, users of the FreeStyle LibreLink and Libre 2 apps had reason again to fear that the software they rely on wouldn't work after updating their iPhones Apple is well known to operate with a near total disregard for the stability of third party software. I wouldn't go so far as saying that anyone who puts Apple in their tech stack for something safety critical and then blithely upgrades gets what they deserve when it breaks, but it's a damn fool thing to do, especially if they've already personally run into problems as a result before.
- petabytes 3y agoThe app needs to be reversed engineered and have a 3rd party reimplemention. Even if it's slightly inferior, it's always good to have an alternative.
- advael 3y agoThere is no way to fix this without law changes. The best would be killing DMCA 1201 entirely, if not the whole DMCA
- averageRoyalty 3y agoI find it crazy that anybody would entrust the primary interface with critical medical devices to be a smartphone. Surely you opt into buying a non-smartphone version? They're not stable enough and will never be.
- Projectiboga 3y agoAbott is sketchy w their Freestyle Libre blood sugar sensors. They only allow them to pair w a single device. This summer I had their external device die and I had to get a third party app to read the data from the still functioning sensor. I refuse to use their official app as it can't be silenced. Dexcom was worse both their app and the external reader had an insane fixed "sensor will expire in 6 hours", no way to mute, adjust, this thing was going off at whatever hour of the night it wanted. I lived fine being insulin dependent for 40 years, and the ease and extra data like an overnight graph are all great. Making noise can and should be default, but I should be able to silence it and I'd click an absolution of liability, these things have to fit into life not the other way around.
- kornhole 3y agoFuture HN Thread: To get my UBI payments in CBDC, I was required to have a chip inserted in my hand. Little did I know that this chip also was scanned and read every time I stepped into a vehicle and from beacons all over town. How can I get this out and still get my money to live?