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Software that supports your body should always respect your freedom

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61–70 of 94 posts

Re: Software that supports your body should always respect your freedom

#61

Software 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Parts of your own body are not your property but are merely licensed to you, and the license can be modified or withdrawn at the pleasure of the licensor) Legi…

> Legislation might be required

Definitely required.

Re: Software that supports your body should always respect your freedom

#62
post #38

100% 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 m…

Software 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

Re: Software that supports your body should always respect your freedom

#63
post #10

Earlier quoted context omitted.

Quality 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.

In EU (and probably elsewhere), there are strict rules for the stability of power wheelchair. One such rule is "On a incline of x% (x chosen by the manufacturer), pushing for max speed from stop should not lift the front wheels" To achieve that, the max acceleration must be quite low (software controlled), and the whole experience is sluggish, like trying to steer a car by pulling on rubber bands attached to the whee…

That is a very poor regulation. Why enforce wheel lift? What matters is that the chair doesn't tip over - that the center of gravity remains in the center of the four wheels.

Re: Software that supports your body should always respect your freedom

#64
post #26
post #25

Earlier quoted context omitted.

This is nuts. Who charges you? Is it the company that makes these devices? What if you want a different “provider”?

Stanford Healthcare charges me for "general classification" just for a nurse to open up their computer and see that there are zero events. Boston Scientific, the device maker, does not have an interface for patients, they only send data to hospitals directly. I'm not currently willing to switch to a different ICD because Boston Scientific's ICD has successfully saved my life 3/3 times in out-of-hospital situations an…

> Stanford Healthcare charges me for "general classification" just for a nurse to open up their computer and see that there are zero events.

Okay so having access to the data wouldn't change a thing, surely you'd be charged even more if you wanted to talk directly to the cardiologist to do a report yourself, as you said?

> inform my cardiologist that there are no events and that there is nothing new to diagnose

Re: Software that supports your body should always respect your freedom

#65
post #56

Earlier quoted context omitted.

> 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.

> 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....

Or the ruling in the first place…

Re: Software that supports your body should always respect your freedom

#66
post #2

> users of the proprietary software app LibreLink Bit of a misnomer.

I 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".

Re: Software that supports your body should always respect your freedom

#67
post #38

100% 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 m…

In your scenario, there's protection at a societal level: manslaughter/homicide law.

Obviously their intent, the jurisdiction, their training/knowledge, and what sort of changes they attempted would matter in terms of how they were charged, prosecuted, etc.

If the device manufacturer updates software and injures or kills someone, they're liable on a criminal and/or civil level.

Before anyone starts rambling about how "they'll just calculate out their liability vs cost of proper software engineering blah blah"...in a civil lawsuit, at least in the US, the punitive portion of damages is for the express purpose of penalizing the defendant for shitty behavior, beyond actual damages, to discourage them and others from doing such a thing again.

McDonalds was slammed hard in the infamous coffee-scald case with a huge punitive portion. Before suing, the victim asked merely for medical expenses - nothing for the (enormous) pain and suffering from her genital burns. McDonalds told her to fuck off.

The jury was (to put it mildly) enraged on a number of counts: McD's knew their coffee was served well above industry standard temperatures, knew they'd injured people, and refused a reasonable request for damages.

Re: Software that supports your body should always respect your freedom

#68
post #23

Earlier quoted context omitted.

I have an ICD (implanted cardioverter-defibrillator) to save my life if my heart stops. I was also given a proprietary box that sits at home, reads data from it and sends it to my cardiologist over a cellular network, on demand. As part of periodic remote checkups I'm supposed to sit next to it, press the button, which causes it to read data and send any abnormal heart rhythms it detected (via cellular network), whet…

That's appalling and should be illegal. I wish more programmers would refuse to contribute to this kind of exploitation.

I work in medical devices and it's extremely hard as a dev to figure out what's because of some regulation and what's just for profit.

Re: Software that supports your body should always respect your freedom

#69
post #33

Earlier quoted context omitted.

>>>should be illegal if uncertified. I think this is the key part of the comment - yes, uncertified changes by anyone could feasibly be illegal. The FDA or similar should probably do code reviews.

Looking at corner cases for this: What if you fix a bug in your own pacemaker? Would it be ok to: a) Fine you? b) Jail you? c) Force you to revert the change? (plausibly leading to death in an extreme case) [edit: I do agree that there's a chance that making a 'fix' to your own pacemaker might also make it worse. In which case, who do we trust more? The person on the ground with a stake in the matter (however misinfo…

I don't think that scenario is particularly tricky. If you modify someone else's pacemaker, it's a tricky question, even with their consent. If you modify your own, absolutely nothing should stand in your way beyond a nice big notice saying "danger of death,on your head be it". That is, you should have the same freedom to screw with your own personal medical devices that you have to climb out of your own fourth floor window.

People have a right, albeit not enshrined in law, to do stupid things that might kill them - at least as long as they don't then ask someone else to save them.

Re: Software that supports your body should always respect your freedom

#70
post #59

Earlier quoted context omitted.

I 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.

You are taking the position that an individual "owns" themselves That is not obviously true. I feel I belong to my family and my community.

Your position is not universal, and in fact strongly opposed by many. I believe that I have the absolute right to edit or terminate my own existence, either on purpose or accidentally. To the extent that anyone can own a person, people own themselves exclusively.
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