Orphaned neurological implants
pluralistic.net
pluralistic.net
I'm all for right to repair, and of course the alternative is to just have a brick. But designing for repairability (and actually performing the repair) has its price tag, and may prove much less practical than we'd hope.
2) I'm surprised a company like this isn't being at least partially funded by the DoD or DARPA.
You seem to hold that truth to be self-evident, but I don't think that it is. Why do you say that? Do you think that the state has no role in making markets, in this case or others?
Again, do you think that the state has no role in making markets, in this case or others?
No, I don't think the state should play any role in making markets, in this case or others.
Markets only exist due to the rule of law. So also you know nothing about markets, and are pro-warlord. Got it.
[0]: https://www.bloomberg.com/features/2017-biological-markets/
They aren't.
Only literal piracy. https://en.wikipedia.org/wiki/Piracy_off_the_coast_of_Somali...
Somali privacy is extremely profitable because of the geography and shipping lanes of the Gulf of Aden, and the pirates certainly operate on a market system, even if they don't respect outsiders property rights. It's not like the US government does either. The people who have their homes destroyed by the US military have no more chance of getting compensation than the owners of cargo hijacked by Somali pirates. If we also consider governments use of asset forfeiture, taxation, fines, licence fees, etc. I think it becomes a little ridiculous to focus on the Somali pirates. There are more piracy in the Gulf of Guinea anyway, so why single out Somalia?
So you're a fan of the market for armed robbery at sea, because it's better when states get out of the way. Got it.
I don't think Somalia is an example of when states get out of the way. I think it's an example of one extremely bad state collapsing and being replaced by many less (but still very) bad states fighting each other in a civil war. It was however a significant net improvement, and I'm glad Barre's regime collapsed, even if it lead to more piracy.
You seem to be here to push a fringe ideology. I respect your ability to talk details about this ideology, but frankly, fluency doesn't make it any less absurd and counterfactual. I refer you to examples above.
Replacing consumer choice with state choice leads to less freedom for the consumer. There are often trade-offs that need to be made with regard to the repairability of a product (e.g. a phone's thickness / water resistance / ability to replace the battery), and for the state to interfere in those decisions by force leads to fewer options for the consumer.
Additionally, we should keep in mind that the state has no incentive to help consumers, as they don't have the resources to lobby effectively. I think "right to repair" laws are primarily about helping some companies at the expense of their competitors and customers.
And we must recognise this as a case of a State (or in this case the EU) making a market better (by enforcing interop with a USB-C) standard. And playing a hugely positive role.
> expect apple would be willing to spend enough money lobbying against the law to make sure it never becomes law in a large market.
Is this what you think _should_ happen?
In which market do you expect that to happen, one is large when compared to (checks notes) ... The EU?
If a company decides to solder tiny surface mount components onto a board and put the device together with glue, that’s fine. Consumers can find a technician with a putty knife and micro soldering station. If the math works out and the business makes sense, the repair technician makes a profit and the consumer has more options.
If the company makes an exclusive agreement with a parts vendor to only sell to them, that’s anti-competitive. The consumer is forced to get repair services from the company. Right to repair says these agreements should be illegal, 3rd parties should be able to buy components. That’s not regulation that replaces consumer choice with state choice.
Certainly there are issues with device serialization, a vendor can make a device brick it’s self if you try to replace a component. There may be security reasons to do this, but in a lot of cases (like one wheel) it is meant to prevent the consumer from maintaining their device. Requiring documentation, schematics, and update procedures would disincentivize companies from making anti-consumer design choices.
It is a pretty evident fact that, in the modern world, a person can not possibly have enough knowledge, understanding, and available time to make enough informed choices for their own survival.
Quick! you're in a shop looking for shampoo and it contains ammonium lauryl sulfate. Is it a valid surfactant, or a ticket to an early grave? No idea? Tough luck buddy.
What I described above is not an absurd exaggeration, is the world we once lived in. See https://en.wikipedia.org/wiki/William_J._A._Bailey
Behind the tempting ideal of personal responsibility lies the flip side of leaving people unarmed and open to manipulation. Everything has tradeoffs, and our system might harm some people when access to reviewed products doesn't come soon enough for them. This damage is far counterweighted by not having your daughter's jaw fall off because she chose the wrong brand of lipstick.
Nobody is arguing against listening to experts or using processes to make safety decisions. I'm just saying that you should not enforce your judgement on other people. I don't object to the state or anyone else making recommendations or to other people following them. Everyone is ultimately responsible for deciding whom to trust. If you trust the state, you should be free to defer to their judgement, as you will be the one to pay the ultimate price if you are wrong. If I trust some other organization, I should be free to do the same. The state's ability to enforce its judgement by means of violence doesn't make it more likely to be correct. Might dosen't make right when it comes to science or individual trade-offs.
If I'm in the shop buying shampoo, I can look for the name or logo of an organization that I trust to determine the safety of products. If I need a medical product that the FDA has not approved, and I'm unable to travel aboard? What I'm I supposed to do? Die like thousands of people before me[0]? Is that just "Tough luck buddy" to you because your ideology is more important than my life and freedom?
[0]: https://www.cato.org/commentary/end-fda-drug-monopoly-let-pa...
Sure, but surely you'll agree that a body of experts trained and given full time dedication to make the choice will make better decisions than an average person encountering the problem without previous preparation.
> If you trust the state, you should be free to defer to their judgement, as you will be the one to pay the ultimate price if you are wrong. If I trust some other organization, I should be free to do the same.
That brings us back to the original situation, with extra steps. Being unable to make informed choices includes being unable to choose the right source of truth to delegate your choices to. People that can't tell the difference between psychology and psychoanalysis won't be qualified to choose between believing a psychologist or a psychoanalyst either.
> The state's ability to enforce its judgement by means of violence doesn't make it more likely to be correct.
The defining characteristic of the state in this situation is not its monopoly on violence, it's its nature of representing the collective will and interest of the people. A state agency that regulates products is not created to be profitable nor to have any interest other than the wellbeing of the people it represents.
> If I need a medical product that the FDA has not approved, and I'm unable to travel aboard? What I'm I supposed to do? Die like thousands of people before me[0]? Is that just "Tough luck buddy" to you because your ideology is more important than my life and freedom?
It is not a matter of ideology. It is a matter of tradeoffs.
The situation you describe is not strictly impossible, but the number of times a person is able to correctly diagnose its own needs and how to solve them better than a whole professional system is a rounding error, compared to the amount of times people will be harmed by incorrectly believing they know better. Since no system can't solve both of those problems, you have to choose the lesser evil.
You choose to identify more with the person who correctly knows what he needs, rather than with the person that in desperation is fooled into believing an incorrect 'expert'. That's understandable, but its human bias, and you're statistically far, far, far more likely to be the second than the first.
The defining characteristic of the state in this situation is undoubtably it's capacity for violence. That is what creates the entire situation. If it were not for the state's superior capacity for violence, it would not be able to enforce its decisions by violence, and everyone would be free to decided whom to trust. To describe the state as "representing the collective will and interest of the people" is simply incorrect. Even if the state represented the will of the majority, it would be wrong to equate the majority of people who live in a particular place with all the people who live in that place. Just as might doesn't make right, neither does being more numerous. In reality, the state doesn't even represent the interest of the majority of people, but only a tiny fraction of people with sufficient wealth to lobby effectively.
Even if you had a hypothetical state that only existent to enforce the will of the many on the few, such a state would probably be wrong more often than an individual because while the wisdom of the crowd can work, it can be easily undermined under conditions I think would be inevitable in such a scenario[0]. A million people who can't tell the difference between psychology and psychoanalysis won't be able to choose between electing a psychologist or a psychoanalyst, any more than they can choose between believing a psychologist or a psychoanalyst. The only difference is that under the majoritarian model, everyone is forced to accept the choice of the majority.
The situation I described happens all the time. It's the rule, not an exception. The link I posted includes several examples. The FDA has become a little better in the last few years, but it continues to kill people by refusing to allow them access to drugs and medical devices. Here is a more recent article specifically about the delay in approving the covid vaccines: https://www.theatlantic.com/ideas/archive/2021/08/fda-delays...
This is not primarily about people who diagnose themselves, although they should have the right to do that as well. It's about people who are diagnosed by a doctor who knows how to help them, but would go to prison if they tried. Often the drug has been used in other countries for years, and the company has simply not paid the FDAs exorbitant licence fees. One example from the link I posted in an earlier comment:
> Pharmacologist William Wardell concluded that the five year delay in allowing the hypnotic Nitrazepam to be used in America (after Britain’s approval) cost 3,700 lives. He believed that the FDA also cost thousands of lives by preventing the sale of the first beta‐ blocker Propranolol for three years after it was available in Europe, and another seven years before it could be used for its most useful purposes. Sam Kazman of the Competitive Enterprise Institute (CEI) figured the annual beta‐ blocker toll at 17,000. Overall, he wrote, “as many as 100,000 people may have died waiting for FDA to act.”
How many lives has the FDA saved by not allowing companies to use the public as human guinea pigs, or present a product as beneficial if when the evidence is clearly in that it is dangerous and harmful?
I don't claim the FDA is perfect, but frankly if you want to reform agencies causing pain, suffering and death by refusing access to treatments, we should deal with insurance companies long before worrying about the FDA.
I agree that the medical insurance industry in the US is extremely dysfunctional (in large part because of regulations), but people have much more recourse when they are harmed by an insurance company compared to a government agency. I doubt more people die as a result of insurance companies decisions compared to the FDA's decisions. I can't find a good estimate for the number of deaths caused by insurance companies, one study from 2009 estimated 45,000 deaths annually linked to lack of health coverage in the US (these would be more comparable to those who die because of the FDA because they similarly lack recourse)[0], this is probably much lower than the FDA's death toll. FDA was also likely a contributing factor in the deaths of many of those who died due to lack of health coverage because the FDA's licencing costs and the slow and arbitrary way it processes applications are a significant reason for the high drug prices in the US.
[0]: https://news.harvard.edu/gazette/story/2009/09/new-study-fin...
Is it against their will though? People want someone making sure pharmaceuticals and other medical companies aren't doing dangerous things. That's why the FDA was created. People forget that most of these agencies like the FDA and EPA weren't created out of thin air, they were addressing real problems affecting real people.
> but people have much more recourse when they are harmed by an insurance company compared to a government agency
Strongly disagree based on real life experience. If the FDA is blocking some life saving treatment do due to unnecessary red tape I can harass my congressman or senator. Oh sure if it's just me they probably won't care unless my story is particularly poignant, but get a few people writing them and they'll take notice (seriously people underestimate how important writing your representatives is). My insurance company doesn't give a shit. My sister has severe MS. Her doctor prescribed a medication meant for people like her, her insurance company said no, they wanted her on a different medication that had never been studied for MS, much less approved. She appealed, the insurance company denied the appeal. The hospital appealed twice, denied both times. A lawyer advised there wasn't much point in fighting further. There's no recourse against the insurance company beyond being sufficiently wealthy to either not need them, or challenge their lawyers.
I trend pretty libertarian when it comes to people dealing with their own bodies. Want to drink formaldehyde because you think it'll cure your cancer? You do you. But if a company wants to sell it as a cure they should have to do some bare minimum of testing to ensure it works and won't just give you more cancer. That's the FDAs job.
I'm sorry for what happened to your sister. As I said earlier, the US health insurance system is extremely dysfunctional. I do however think you are grossly overestimating the effectiveness of contacting members of Congress. They neither have any reason nor any ability to help with the FDA or most other things. I doubt most members of Congress could even do anything (except travel aboard) to save their own life if they needed a drug the FDA had not approved, and they did not qualify under the very limited right-to-try law (that was still a step in the right direction).
Unless you are wealthy enough to compete with the pharmaceutical companies that lobby to maintain the current rules, you can have no real influence over the FDA. You might as well write the insurance company's shareholders, and get the same polite version of "no, we like money" back.
I would support allowing companies to opt in to regulation (and pay the full cost of it) and only allow companies that have opted in to claim to be regulated by the relevant agency. That way, those who trust the state can choose to only use things the state has approved and no-one else will be harmed when the state is wrong.
Interesting idea, thanks.
My original comment was more around ensuring that customers are protected from bankruptcies and other situations that severely impact them like these neurological implants. I'm not saying we should've prevented the company from selling these things. From what I've read, it's incredible what was possible and how the lives of these people were positively impacted.
I was thinking more along the lines of something like the Superfund program or how nuclear power plants are legally obligated to set aside money for future decommissioning. Maybe some form of legally mandated insurance program. Or regulating support time frames or mandating how long replacement parts must be available or remain in production.
2- the DOD's finally been able to put a spotlight on the fragility of the supply chain due to mergers, monopoly, lax regulations on foreign ownership, etc. [1]. So even if they did get seed funding from DOD or DARPA, it wouldn't necessarily stop this from happening. But it looks like that regime is (thankfully) ending.
[1] https://mattstoller.substack.com/p/nancy-pelosi-china-and-th...
How can it be legal to do this to people, couldn't the implants just keep working with the existing firmware? Why did the company have to deliberately brick them all?
This is absolutely horrifying.
And we seem resistant to learning any good lessons from it. We go for the "ooh, shiny" solutions that grab headlines, even for medical stuff where we should be more concerned about things like health and reliability.
Being upset on behalf of these people most likely does nothing for them. Humanity would be better served by us wondering how to stop doing this kind of thing to people.
The short version is "Don't attribute to malice what can readily be explained by stupidity."
This is not all that different from organ transplants which also garner a lot of headlines, can end in the organ being rejected and the recipient dying slowly because of it and even if successful will require lifelong antirejection drugs. And yet when I suggest we might try harder to help people keep their own organs more functional in that case, I'm generally given all kinds of flak.
I think this is the same thing: people coming up with solutions for failing organs that will grab headlines and "LA LA LA Not Listening!!!" about details like "Yeah, but what if it breaks at some point?"
It happens because a very large number of people are happy to be cheerleaders for "Ooh, shiny!" solutions and don't want to hear that there could be quieter, saner solutions available if only we tried harder to look for and implement those. It takes a long list of people cooperating to make something like this happen. It doesn't happen because of just one lone person pushing for it.
By the time it's a negative headline on HN, it's too late for so-called common sense to prevail, unfortunately.
Brilliant! Why did nobody think of that /s
Major organ transplants are pretty much only performed on people for whom it is the last resort. In fact, there are not enough organs to do transplants on everybody who would need it, let alone waste on people who don't.
And, no, we don't try hard enough. There is lots of room for improvement.
I feel for the majority of transplant cases the answer is going to be along the lines of "you shouldn't have gotten (into an accident|leukemia)" which is technically true yet at the same time very unhelpful.
I don't think that deserve any flak. That is a very sensible approach.
It is so sensible that it is basically the minimum acceptable standard of care. Can you show us any story where any doctor did otherwise?
I was diagnosed late in life with a relatively mild form of it. "The normal progression of CF" is a standard phrase in the CF community and its purpose is to tell patients to quit their bitching and accept that their steadily declining health is a NORMAL for people stupid enough to be born with this genetic disorder.
Having been diagnosed late in life, etc etc, I found my diagnosis very empowering and began getting better. My doctor expressed zero curiosity about how that was helping and simply scheduled me fewer appointments because "he had patients that actually needed him."
I used to have a hole in my left lung. I don't anymore.
I used to be a lot more open about my medical situation on HN under my previous handle of Mz. I've toned it down a lot because I get so much utter and complete bullshit from people who absolutely refuse to believe that I could possibly know anything medically significant.
I've had a really fucking bad day. I'm sick to death of a long list of things. I don't plan to continue to argue this on HN.
I'm right. I know I'm right. I know there are people who know I am not making this shit up.
But I'm likely to die on the fucking streets because the entire world is hellbent on believing "A former homemaker cannot possibly know fuck all that's medically useful, and we do NOT care that her life depended on it. LA LA LA NOT LISTENING."
Goodnight HN.
There was no saving my liver, which failed because of Hepatitis C due to tainted blood product. I lived day to day before transplant worried that I might bleed out, one of the horrible ways liver disease can kill you or knock you down. At the same time, I read liver support groups where people discussed many different "liver health" techniques, some sensible and some not. Some gave benefit to the sick, some gave hope to the hopeless, and some provided dangerous diversions to people whose only real hope was to get evaluated for transplant and accepted on a waiting list.
After dealing with the trauma of severe disease and the sick life-and-death game of organ allocation, one of the hardest mental changes I had to make post-transplant was realizing that those days were done. I might face other health challenges, but they would be different ones. The story here is different: people being plunged back into darkness not because their devices failed, but because of tech startup level problems. It's pretty cruel, almost dystopic.
I don't know how people think devices need updates to keep working. No they don't and no they shouldn't.
Arguably, working incorrectly is worse than not working.
Still better than being locked out.
Best comment from old thread:
chroma 10 months ago | parent | prev | next [–]
As other comments have mentioned, the article is misleading. No software or hardware was remotely disabled. Parts failed over time. Once the company went out of business, support was no longer available. Yes, this is terrible, but there was no malicious intent. If anything they tried mightily to support their customer base despite losing money the whole time. More importantly: If you require that medical devices be supported indefinitely, you will heavily discourage anyone from making medical devices. Such a requirement is an endorsement of the Copenhagen interpretation of ethics.[1] Had this company not existed, these people would have been blind for the rest of their lives. Instead, this company tried to help people and ran out of money. The net effect is that blind people were able to see for years. This is much better than the alternative. If you want to assign blame, assign it to the FDA. They're the ones who make it practically impossible to roll out any new medical technology. Their byzantine rules prevent the sale of devices as simple as epipens.[2] Their requirements (though well-intended) drastically increase treatment costs and slow the pace of progress. 1. From https://blog.jaibot.com/the-copenhagen-interpretation-of-eth... > The Copenhagen Interpretation of Ethics says that when you observe or interact with a problem in any way, you can be blamed for it. At the very least, you are to blame for not doing more. Even if you don’t make the problem worse, even if you make it slightly better, the ethical burden of the problem falls on you as soon as you observe it. In particular, if you interact with a problem and benefit from it, you are a complete monster. I don’t subscribe to this school of thought, but it seems pretty popular. 2. https://slatestarcodex.com/2016/08/29/reverse-voxsplaining-d...
Weird take, FDA regulations much like FAA regulations are put in place very often as 'paid-in-blood' from data on previous accidents and faulty devices.