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    If there’s anything that should be required to use free software, it should be biomedical devices. To have a part of your body only modifiable and controllable by a corporation that keeps the details as proprietary secrets is like something out of a cyberpunk dystopia. And yet, this article is a great example of it happening!

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      I guess the counter-argument is that (as a society) we don’t want random people tinkering with medical implants, for the same reasons we don’t want people making snake-oil medicine or amateur surgeons.

      I’d like to think there’s an acceptable middle-ground, but I’m not sure what that would even look like.

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        I guess the counter-argument is that (as a society) we don’t want random people tinkering with medical implants, for the same reasons we don’t want people making snake-oil medicine or amateur surgeons.

        There are actually pretty robust communities working towards automated insulin delivery and (IIRC) CPAP machines. And on the medication front you have RADVAC. There’s a lot of interesting exploration going on here.

        I’d like to think there’s an acceptable middle-ground

        One option I heard that appealed to me: the FDA should require code escrow for all medical devices, and release code for any devices that are still in service after the manufacturer ends support.

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          Code escrow is a good first step.

          But you need access to all the development tools like JTAG debuggers as well.

          Also, this all breaks down of the device firmware is locked down, and / or requires signed code.

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            Required signed code is fine - even good - but the key for signing code that runs inside your body should be your own private key.

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          There’s nothing illegal or immoral about eating snake oil or trying to do surgery on yourself.

          Segfaulting my own cyberware is pretty scary, but somebody else segfaulting it and having no recourse is scarier. The acceptable middle ground is sufficient documentation that a professional is capable of fixing it, and an amateur is capable of hurting themselves, but hopefully wise enough to choose a professional. This is how medicine works on stock hardware already.

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            Requirungy something to be open source doesn’t imply that random people add random code.

            People also tend to run custom versions of big open source projects. However I think you should have full access on software installed on your body and if you want to should be able to have it changed, just like body modification at large.

            Will it be exploited by greedy companies? Certainly. But the same is true already for body modification and likely medicine at large. There’s always gonna be someone going as unethical as someone is legally allowed to to maximize profits.

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            there don’t seem to be many companies creating this kind of technology. Adding additional burdens on them doesn’t seem like a promising way to promote these systems.

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              Medicine has never really been a place where market dynamics did either well or good.

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                Yeah, this might not be a problem which the free market is capable of solving on its own. Good thing there are ways to fix that too.

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              Seems like we need a deposite regime to ensure all designs and code are available. And probably at least one third party maintenance partner that can repair the devices.

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                I’d prefer a system where the national health service (everyone has those, right?) requests tenders, selects vendors, pays for upkeep/training for a number of years, and gets access to all source code / manufacturing details etc.

                It might not be VC money, but done right it can keep a company profitable for years.

                (I don’t know if health services already do this, for ear implants f.ex.)

                This article is pretty depressing, both because of the social failure (not market failure) and because the tech is despite all this still so limited. My wife and stepchildren have retinitis pigmentosa, and I had naively imagined tech to at least alleviate their condition.

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                  Imagine technology chosen for being the lowest cost, or for having greased the right palms. Sounds like I’d prefer the open source approach.

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                    Agreed on the palm-greasing part, but lowest cost is not the issue - it is when quality is sacrificed in pursuit of lower costs.

                    There have to be mechanisms in place to ensure that quality (across many aspects) is held above a standard, while still allowing vendors and manufacturers to drive costs down. Low cost is a long-term good thing for people with lower wealth, because even assuming large subsidies, there is only so much we can allocate to particular problems.

                    This is important in every industry, but the quality aspect has to be much more heavily weighted in the medical device world because of the drastic consequences of allowing companies to ignore their long-term negative externalities, as seen in the article.

                    It’s a tough issue because it has to be balanced with incentivising smart people to solve these problems in the first place. I like the discussion here around escrow of code, but seems like we need more than that. Escrow the hardware design files as well, and require proof that the company has done due diligence in protecting their supply chain from single sources of failure. Multiple sources for components. Escrow the documents detailing repair procedures, including repair part sources and test equipment. Etc.

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                    Interesting that you (correctly, in my opinion) identify this as not a market failure.

                    I’m of a different opinion to you as how best to handle this sort of situation. I’m not a socialist; rather, I think that voluntary solutions to problems like these are better in a number of ways. This particular problem could be solved by either the use of appropriately licensed free software and hardware, or an escrow system in the case that the devices are withdrawn from the market for any reason (thereby mitigating planned obsolescence, too).

                    However I am sick of the term “market failure” being used to describe a functioning market providing prices that people don’t like, so I was pleased to see someone of (I presume) quite different political stripes calling it out.

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                      A state/nation is probably the only entity that can correctly price what this kind of technology is worth. In principle, a blind person could be expected to spend a lot of money to get even a small amount of sight back, but in practice, most blind people are economically disadvantaged, because their handicap preclude them from amassing enough capital for actually pay for the solution.

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                        A state/nation is probably the only entity that can correctly price what this kind of technology is worth.

                        But then you’re right back to considering this a market failure - only instead of proposing price regulation, you’re proposing the establishment of a monopsony to use taxpayer money to drive the prices up to where you personally, not the market, think they belong. Presumably to create incentives for the research?

                        but in practice, most blind people are economically disadvantaged, because their handicap preclude them from amassing enough capital for actually pay for the solution.

                        Yes. Probably a VC-funded for-profit isn’t the answer here. Perhaps a charitably-funded non-profit? (Edited to add: this would also address the obsolescence issues, if done properly.)

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                          you’re proposing the establishment of a monopsony to use taxpayer money to drive the prices up to where you personally, not the market, think they belong

                          This is not what I propose at all.

                          This is drifting off-topic, I won’t continue this thread. ∎

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                      Mostly a good idea but

                      pays for upkeep/training for a number of years

                      This is still a cliff someone could fall off. Individualist solutions create lots of cliffs for everyone who doesn’t have infinite money, but collectivist solutions also pose similar problems. Full access to the materials required to repair your own implants alleviates this at least a little - you still need money and/or skills but at least you’re not relying on an organization (governmental or private) to provide support for ever.

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                        A country knows through statistics how many citizens have RP. It can also calculate the raw savings of allowing people with RP more years of productive work if they get this kind of therapy. This can be translated into a commitment to pay a company a certain amount of money for a technical solution, letting that company set up tooling and training. As the technology advances, and more patients are helped, the technology can be accepted in more countries, opening up new markets and helping more people.

                        Granting a patent will ensure the technology is available after the state-granted monopoly has expired.

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                          Measuring the benefit is really difficult though - it can take a long time and a lot of samples, and it’s difficult to predict how an early stage technology’s benefits would develop - the target can be moving pretty quickly. Even getting VC funding for something that’s working fantastically can be tricky, especially if you run into non-medical issues (regulatory, product engineering etc).

                          I’d dearly love to see state-sponsored systems to bootstrap these things but it seems like working out what will succeed is a nigh intractable problem. I’ve been building implantable neuromodulators for over a decade and I’ve seen so many devices that just seem to be splashing around in the dark. On reflection, all the impossible promises about high-res retinal prostheses are a good example!

                          Adding more electrodes doesn’t work for very long. The electrodes are relatively far from the nerves they stimulate so the current spreads a lot. And you’re limited in how many electrodes you can activate at once due to the current density - so that you don’t cook the patient.

                          A state agency trying to review this without the wisdom of having built these things is difficult to set up - even the existing safety regulators have trouble keeping up (no doubt a lot of that is due to under-resourcing, though).

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                            Thanks for expanding! I don’t know much about this tech space.

                            Measuring the benefit is really difficult though

                            Absolutely. But I think it’s more achievable if you have a large sample size / patient pool. guaranteed funding, and requirements for followup etc. I also think that if you’re designing something that will be used for the rest of someone’s life, you should have different priorities than just looking at the next quarter. Trusts seem to shoulder some of this responsibility in many countries.

                            Adding more electrodes doesn’t work for very long. The electrodes are relatively far from the nerves they stimulate so the current spreads a lot. And you’re limited in how many electrodes you can activate at once due to the current density - so that you don’t cook the patient.

                            Ah, the old software/hardware interface. I curse it every time I have to use a printer ;)

                            Seriously though, it is a bit depressing that the stuff that’s breezily foretold in SF isn’t achievable in the real world due to heat dissipation.

                            To sum up, we’re in early days of the kind of medical devices that require peripherals like camera etc. The patients in the linked article presumably knew they were part of a pilot group (although information asymmetry comes into play really quickly). I think the company made a good faith effort to get a product to succeed, but the financial support simply wasn’t there.

                            The French effort seems to target age-related macular degeneration which is a better bet - a much bigger market (all those boomers who will demand tech solutions to their aging problems) and hopefully RP patients can “ride the coattails”.