I really like the proposal from John Scalzi's 'Lock In' series where companies that produce neural implants have to establish a trust or insurance contract with enough assets to pay for the maintenance of any implants for the lifetime of the recipients, regardless of what happens to the company.
Governments could provide generous subsidies, tax breaks etc. to such funds to reduce the barrier for entry for companies.
Without some solution like this, it's hard to imagine any non-essential neural implants really taking off: who would ever buy a neural lace from a startup — or even an established company like Google who might just lose interest — if there was no guarentee of patches and maintenance?
>> Without some solution like this, it's hard to imagine any non-essential neural implants really taking off: who would ever buy a neural lace from a startup — or even an established company like Google who might just lose interest — if there was no guarentee of patches and maintenance?
Speaking as someone who lived with chronic, daily, horrific pain for years before a surgery miraculously solved most of my problems - if that surgery had not worked or wasn't available, I would have eventually signed up.
Thousands or more people live with debilitating pain that drives them to suicidal ideation, drug abuse, and worse.
We already live in the future you describe and people turn to far worse things than neural implants to cope.
Agreed. I meant 'essential' in a weak sense to include all high stakes medical cases, not just literally life and death.
The key thing is that we won't be able to get much benefit from neural implants as an enhancement technology without solving this problem; there's a ton of potential value which will be left on the table because people are reasonably afraid of these risks.
You could have signed up only if excessive regulatory burden wouldn't have killed or prevented the startup from existing.
I find the whole "medical startups should support their patients post bankruptcy" train of thought very disingenuous: as long as we as a society make no public concerted effort to cure these people and leave them to the mercy of the markets, then surely some relief from their problems, even if temporary, is better than none, especially if it provides valuable experience that other more successful companies can use in the future for many more patients.
In view of these future possible patients, it would be downright imoral to burden such startups, which already take enormous risks, with unreasonable costs such as ensuring their devices function into perpetuity.
Yes, they should be regulated to not make the problem worse after they inevitably fail - primum non nocere. But most of the other ideas proposed in the article have a toxic effect on the business viability of medical startups, possibly preventing them altogether.
Then they should escrow all of their intellectual property and at the very least release it all to public domain the instant they stop supporting the device.
I agree. Schematics, documentation, software should be in government escrow, otherwise you're not allowed to patent. Software updates have to be saved here as well.
If the company goes bankrupt all IP will be released to the people. At least then motivated people can learn how to fix things.
I strongly doubt the issue preventing support for these patients is the intelectual property in general. Source code, I agree, but things like medical patents are irrelevant if you have to replace a battery cell in a custom form factor or chemistry that is no longer manufactured, per the article. The insurers actively fought the patient changing his own battery.
You also diminish the expected value of the startup because the ability to liquidate IP after comercial bankruptcy is a factor reducing risk - investors get at least something back. If you dictate confiscation of that IP, you also reduce the willingness to invest in what already is a very risky proposition. And that's how you get to a 3 trillion ponzi bubble in crypto that solves no problem, while similar investment into medical startups would create thousands of products, treatments and long term wealth.
Sorry, but no amount of downvotes will make me accept a clearly populist and virtue signaling approach that will actively harm patients and discourage investment in medical innovation.
> And that's how you get to a 3 trillion ponzi bubble in crypto that solves no problem, while similar investment into medical startups would create thousands of products, treatments and long term wealth.
I'm extremely glad that the types of people involved in crypto are in no way incentivised to do the same thing to the medical industry. Theranos was bad enough.
I'm not sure why you'd ever want to see crypto's web of scams and lies replicated in the medical industry. At least with crypto the harm is mainly limited to finances. When the grifters are peddling drugs and medical devices the consequences are much more dire.
> Sorry, but no amount of downvotes will make me accept a clearly populist and virtue signaling approach that will actively harm patients and discourage investment in medical innovation.
Not allowing bad actors free reign over people's health isn't populist or virtue signalling. The majority of these regulations were written in blood.
Flawless in principle, but harmful slogans in practice because it fails to develop those ideas for the particular situation at hand.
Sure, medical regulation should exist - I specifically mentioned the "primum non nocere" principle as the basis for that protection. Things like access to source code and right to repair, some guarantee the device can be removed and won't become actively harmful etc.
But some of the specific kind of regulation this article argues for are unreasonable to the point of killing the prospect of a cure.
The point of the crypto example is not that regulation is harmful, but that people respond to incentives - exactly the same investors have a choice between some sort of a MMORPG poker that is crypto versus a medical start-up. And guess what, they choose the "investment" where money is moved around and they have the chance to earn something at the loss of others, as opposed to the medical startup that could cure people but is - due to dumb regulations - more likely to lose money in the average/EV case. It's not me who brings the crypto madnesses into the medical field, it's whomever bombastically claims some irrational behavior from investors, while expecting them to foot the bill for medical innovation - that was the premiss of the comment you replied to.
You might have missed the part where I write: "as long as we as a society make no public concerted effort to cure these people and leave them to the mercy of the markets...". Everything follows.
Even then, I'd rather let the big corp do their things being while regulated than letting reckless startups harming people in the process of trying to get a nice exit getting acquired by the same big corps. I've yet to see an example where the move fast, break things and kill people line of thinking from the SV produced some net social gains.
So your solution is to just treat patients like garbage and shrug at them when your startup goes bankrupt? You want to protect overly rich VCs instead of the patients?
Virtue signalling? I call this "not being like dr Mengele"… if you think that's virtue signalling you are just a bad person.
I believe he's clearly indicated that he think this is in the best interests of the patients, not the VCs. Not sure if it's a reading comprehension issue or if you're just trying to score points.
He wants the patients to actually get their devices that make their lives bearable rather than these devices continuing to remain theoretical.
> He wants the patients to actually get their devices that make their lives bearable rather than these devices continuing to remain theoretical.
Yes he did say that, but it's a false dilemma fallacy. Startups with insufficient regulation don't get you “devices that would otherwise remained theoretical”, they give you FTX and Theranos.
If you want to build a health start-up but cannot uphold basics ethical principles (like: do not abandon your patients on their own if your business plan failed), you should just seek another market.
I wouldn't be so sure. I read manholio's posts multiple times and their position it still unclear to me. "Immoral to the investors" but some - I believe feinted - concern for the people.
I am having a hard time treating investments as oxygen masks on airplanes.
Two kinds of people will buy them: enthusiasts and people suffering from chronic conditions with nowhere else to turn. Similarly, you can buy unapproved, unresearched medication on the internet. You take on the risk.
Personally I like the idea that people can take their lives in their own hands. As long as it's clear that they're opting out of the guiderails put into place for those of us who are more cautious.
If we were a lot better about not letting your teens and twenties so heavily define your story arc as a human, maybe. But without some sort of insurance and/or escrow program any implant than gives you any kind of edge will be accepted by people too young to really understand the consequences.
Especially the sorts of people who think they'll dead by 30 so side effects that show up in your 40's are no big deal.
The older I get the older the age of 'irresponsible youth' becomes. Now it's past the twenties..?
I think people deserve to control their own fate, disastrous consequences be damned. That's part of life, and always has been. To pretend that we need to protect against that type of insecurity is absurd.
> The older I get the older the age of 'irresponsible youth' becomes. Now it's past the twenties..?
I feel the same way, but with the opposite conclusion. The older I get, the more larval and innocent teenagers and twenty-somethings seem.
I mistake 25 year-olds for 17 year olds. When I'm explaining something, sometimes I can't think of a historical or technological analogy that a 25 year old is likely to understand.
I see the mistakes in reasoning that they're blundering into with the best intentions (and utmost seriousness) that could have been avoided by reading a little more, thinking a little longer - then realize I hadn't read that stuff by my early twenties either, and could have easily made the same mistake. Then I remember some of the mistakes I did make, and wish they had been harder for me to have made.
I’d split the difference between the two opinions here. You have to let juniors make some mistakes. Both so that they can learn, and so you can teach anyone else around (wisdom is learning from the mistakes of others).
We don’t do this with gun safety, because the lesson comes too late and at too high a cost. There may be nobody to teach afterward. So we demand that they act a certain way and come down like a ton of bricks on anyone who fucks around.
But a medical implant isn’t just a personal decision, it’s a transactions with several other commercial enterprises, with financial interests in selling more of them. This will be the next heroin epidemic, or the one after that. It’s predatory. And as someone who has survived predators, it’s people like the three of us who have a moral obligation to watch out for predators while the children play. That’s part of the deal of being a pack/tribal mammal. It’s civilization.
What kind of consequences are people in their 20s too young to understand? In democracies we generally assume those 21+ can understand all the issues, which is why we let them vote.
This seems sorta like not letting 80 year olds have email because they don't understand it and might get scammed.
You’re here talking to a group largely composed of people who won the career lottery. Did all of your college friends fare so well? How about high school? Hell in middle school and high school I had people trying to talk me out of software as a career because we were on one of the three AI hype cycles I’ve personally lived through.
It’s the rare, inspirational person who says Fuck It, I’m Starting Over in their thirties or even later. Many of the losers just live lives of quiet desperation. Those are the people I was thinking about above.
Mid 30s but do have one acquaintance who's 20. It's possible I have a biased sample, but I have honestly not noticed a big difference in decision making between 20 year olds and 40 year olds.
You probably do. My mentees are all very biased. I pick the ones who have a good head on their shoulders. We all had that friend who was an “old soul”. I spent a lot of my teens socializing with 30 year olds (bike club) so I’m probably seeing myself in these junior developers.
But not a year has gone by but I wish I had a time machine, not just for myself but for a friend who had big dreams when we were 16-26 and never found their way. Of the dozen smartest kids in our high school, one became a doctor (but married to the slacker in the group), one a lawyer, one a salty cynical programmer. I found one managing a movie theater a year after dropping out. One I imprinted on in college, because I thought she was so world-wise and knew what she wanted to be, ended up becoming a stay at home mom, never really had the writing career she hoped for. Student loans were part of that dynamic, which is another decision we put on children (see also John Mullaney).
> Personally I like the idea that people can take their lives in their own hands
But rhey are not putting ut in rheir own hand, they are putting their luge unto rhe habds of a capricious and cruel, and occasionally fraudulent executive. Wonder, where did we see this play out before?
"renew subscribtuon or we turn off the implant"?
This will be a story of human rights abuses, debt ytades and endentured servitude.
I think the biggest problem is that people desperate for a cure or even a bit of relief are the easiest possible prey for fraudsters peddling snake oil. You need extremely good regulation to be able to both allow innovative life-saving treatments to be tested and offered to those in need as soon as possible, but also to prevent too-good-to-be-true lies to be sold to the most vulnerable.
Letting people take their lives into their own hands is fine for now, while neural implants are largely useless for enhancement. If there came a day when a neural implant provided, say, a massive competitive advantage when working, we’d probably want to regulate.
But I mean widespread neural enhancements are probably as far away as… maybe not post scarcity society, but at least “I can get by on basic income” society. So I’m not too worried.
If it means those of us who compete daily with our brains have an opportunity for an advantage—or at least parity—I’m all for it. I don’t expect it will happen within my lifetime but it would be nice for those who follow.
I do think there’s a fundamental difference between sport (where we explicitly want to create a level playing field for fun) and the economy (where we’re competing with each other, but also against the universe).
We might find that there are some tasks where having people take on risky enhancements really helps “team humanity.” But certainly wouldn’t want “takes on risky enhancements” to become a trait required to get by.
I’d look at it as like minimum wage or OSHA. You could provide yourself a competitive advantage by working for less than minimum wage, or by being willing to work in an unsafe environment. But as a society, we’ve decided that engaging in that race to the bottom is not something we want to do.
> We might find that there are some tasks where having people take on risky enhancements really helps “team humanity.” But certainly wouldn’t want “takes on risky enhancements” to become a trait required to get by.
You may already have heard of it but there's a movie called "Gattaca"[0] that questions a world where genetic enhancements have become effectively mandatory.
Is that really the theme though? Last time I watched it, the theme was "Man with debilitating genetic defect (high risk of sudden heart failure) was denied a chance at piloting a billion-dollar spacecraft. So not an underdog; a selfish person wanting to risk public money and lives, for personal glory.
I never saw the theme the movies is purported to present. I think Gattaca is conflated with other genetic-modification memes because it came out around the time those were current.
If the director wanted the movie to be about a hero, they fumbled it.
In Homo Deus, Harari mentions research by DARPA (?) on a focus-enhancing helmet. This was reported some years ago already and the journalist who wrote the piece had experienced the effects first have in a sniping simulation.
So to some degree the tech is already here.
I'm fine with that, assuming the devices, specifications, communication protocols etc are available... even if I (anyone) wouldn't be able to do it themselves, leaving it as an option for someone to take up is far better than left in the cold with an uncontrolled implant in one's body.
Or even better, if the company fails to fulfill their obligation, their patent and proprietary information is automatically obtained by the government. If they subsidize, there should be strings.
Opening the proprietary information allows patients to take control of their health, and gives more options for doctors to help them, and for groups who might take up the helm of maintaining or removing implants from existing patients. It also allows iteration upon the design, so that it may be improved even if the original company was unable to improve it themselves.
I agree, but I think it's better than the alternative of it remaining with some patent troll to never be used in a productive way. If it remains in private hands, we don't get a say in what happens to it. If the government owns it, there's at least a chance that democratic processes can affect what happens to it and standards can be enforced that licensees must meet or adhere to.
There are plenty of NIH patents that are licensed, and while some of the companies they're licensed to make my skin crawl, they're at least being used productively, and not locked away to be used as a cudgel in a legal racket.
At the very least, ALL technology information, including all designs, source code, notes, studies, support logs, etc. is placed in escrow with the appropriate govt agency. If the company (or its successors) is unwilling/unable to provide continuous and effective support for the implants & associated tech, it is all open-sourced / becomes public domain.
This provides at least the tech basis for minimal right to repair/remove to other physicians.
This is probably the singularly best option available... And should extend to any parties buying related IP from said company, that the culpability falls on them.
We need to be very careful with brain implants designed to relieve pain, lest we repeat the mistakes which brought us the opioid crisis.
I've seen videos at BCI conferences of deep brain stimulation implants which provide the patient with a "happy button" to relieve chronic pain/anxiety/depression/etc. They seem to work very well in a clinical setting, but the patient reactions make it clear that there will be an enormous potential for recreational use (and abuse).
The “opioid crisis” is a crisis because (1) it is easy to accidentally kill yourself with opioids; (2) drug criminalisation makes recreational drug use a lot less safe than it could be were it legal and regulated
I doubt overuse of a “happy button” brain implant is going to kill you; and I doubt it is going to end up in a similar legal situation to recreational drugs. So, whatever the negative impacts of overuse of such a button might be, I expect they’ll be a lot less severe than the opioid crisis
It's a bit more complicated than that: the pharmaceutical companies underplayed the addictiveness and overplayed the benefits of opioids for years - so even under doctor supervision tons of folks got hooked, and many turned to the black market when they got cut off.
https://www.northpointwashington.com/blog/big-pharma-big-lie... is an interesting article about this in the context of Oxycontin. One detail I find particularly interesting is that Purdue pharma marketed it as a 12 hour pain killer when the data clearly only supported it being good for 8 hours... leading to increasingly stronger doses being prescribed rather that admit the 12hr guideline was wrong.
Note that I'm mostly for legalized drugs. I just have heard this data and I don't have an answer to it. My impression is I just take it on faith that less criminalization will be a net positive but I don't know that's for sure.
Alcohol is a terrible drug and kills you in a known fashion, but you don't buy a can of beer from the store and then die from drinking that can because it was actually bleach, because alcohol is legal and regulated product. Drug addicts hooked on oxy getting their fix off the street are getting killed because street supply is dirty and inconsistent. Having a consistent supply would lead to fewer accidental deaths from unknown supply.
More likely: It releases happy stuff when you see the right politician, and stop when you see the wrong. Imagine that sort of manipulation at scale and you get the future of brain implants.
Opiate crisis has less to do with people’s deaths and more about their addiction. The lengths they go to score another fix—stabbing people, robbing family members, selling themselves, etc.
It’s one thing to die from doing something stupid—it’s something else entirely to inflict pain and hardship on others.
> The lengths they go to score another fix—stabbing people, robbing family members, selling themselves, etc.
Would they do that if the government just gave them the drug they are addicted to for free? I don’t think so.
Is the real problem then the addiction, or the public policy context in which the addiction exists?
Of course, I wouldn’t want to be addicted to opioids, even if the government gave them to me for free, due to the potential negative long-term health consequences, and also potential negative impacts on cognitive functioning which may in turn limit one’s educational/career/life prospects. But I don’t know if being in such a scenario, even if millions were in such a scenario, would be a “crisis” in the same sense that opioids currently are
Methadone/Suboxone are opioids prescribed for addiction and are often free through low income programs. If they were made more accessible would that solve the crisis? I don’t think so. It’s hard to get to the stage where you accept them as a necessary solution and are still in the dangerous area of trying to taper with unknown quality substances. High quality government heroin/pills and supervised usage would likely work but it’s clear the US would never consider that an option.
> Methadone/Suboxone are opioids prescribed for addiction and are often free through low income programs. If they were made more accessible would that solve the crisis? I don’t think so.
It is unsurprising that if a person is addicted to substance A, trying to substitute it with substance B, which has different properties (even if chemically related to A), doesn't always work. The real solution is to supply them, legally, in pharmaceutical quality, and for consumption under trained supervision (whenever safety demands that), the actual drug they are addicted to, not some substitute.
> High quality government heroin/pills and supervised usage would likely work but it’s clear the US would never consider that an option.
Okay, but if you aren't willing to seriously consider every possible solution to a crisis, that makes your stubbornness a major part of its cause. Government drug policy is a huge contributor to the crisis, and if the government isn't willing to make major changes to its drug policies, the crisis is likely to continue, and the government deserves every blame for that.
All I need to do is provide a heroin user fentanyl. We have tried heroin from the government, but the users want fentanyl. And, of course, the "black market" will not limit the amount the user gets.
Now, if you provide a "safe injection/usage site", that attracts the "black market" dealers. Seemingly, that also attracts other "undesired". Take, for example, the problem of homelessness where I live. It is actually difficult to remain unhoused. But, the care demands "no alcohol", "no drugs", "no violence". And a lot of customers do not like those terms and rather live on the street.
Government to blame? Do we not live in a democracy?
Part of the longer term crisis comes from maladaptive coping mechanisms. Time will tell if a “happy button” is adaptive or not. My guess is that those tools which promote use ahead of outcome aren’t really fit for purpose.
That said, I’d gladly stick my head in a microwave if it’s make a bad day more bearable.
There are plenty of people on long-term treatment with opioids, like Suboxone, that almost eliminate the major problems concerning illicit opioid addiction.
Plenty of people live normal lives while on Suboxone, where they might have been living on the streets and doing things no one wants to do in order to obtain illegal opioids. A lot, if not the majority, of those people used illegal drugs as coping mechanisms.
Criminalization, lack of supply, lack of purity of substances and lack of public health treatment are really what makes opioid addiction a life threatening/ruining problem. Things like Suboxone address all of those issues, and the successful lives of Suboxone patients say a lot.
> everyone should take this magical substance that alleviates the problems of the world.
That's a weird claim considering no one said that.
There are currently two long-term maintenance opioids on the market: Suboxone and methadone.
Compared to committing crime in order to afford a $200+/day heroin or fentanyl habit, regularly overdosing and/or living on the street, yeah, these drugs can be life saving and let people live normal lives.
They of course have their downsides, they're still opioids and you're still addicted if you take them, but they're legal, pure and given under controlled conditions, which seems to eliminate 99% of the life threatening/ruining effects of illicit opioid addiction. People can live functional lives on them, which given the alternative, is pretty nice. It also shows that drug use, under safe conditions, doesn't necessarily result in a long-term crisis.
That said, the only people who should consider long-term maintenance opioids are people who are going to die or end up in prison if they continue taking heroin/fentanyl/etc. The idea that "everyone should take this magical substance" is a joke that no one has ever claimed.
They are not "legal and regulated" for recreational use.
Furthermore, some argue that even medical use is over-regulated, to the point that people with genuine needs for them are being denied them by doctors who have become overly hesitant to prescribe them out of fear of the regulators. (Of course, if these claims of excessive prescriber hesitancy are true, that hesitancy itself is not a cause of the "opioid crisis", maybe rather a consequence of it; instead, that hesitancy would be a contributor to the "pain crisis" which has been with us since the dawn of time.)
One thing I personally find shocking - in a number of Australian states (and I believe the same is true in some US states), terminally ill people in severe pain can legally request assisted suicide – and yet, they can't legally have diamorphine (heroin) as a pain treatment, despite evidence that in some cases it is actually a superior pain treatment to any other opioid available.
Claims made by government agencies in some countries (such as the US or Australia) that diamorphine has "no legitimate use in medical treatment" are simply falsehoods. In some cases, it is the best clinical option. Those cases may be relatively rare, but they aren't non-existent, and to continue with an absolute ban on its clinical use (despite the fact that other jurisdictions, such as the UK, use it clinically with no major issues) is totally unjustifiable
The character Garak on DS9 had a brain implant that was designed for resistance to torture. One day he just turned it on, and getting off it was like drug withdrawal. About the same for Louis Wu on Ringworld. "Wireheads" would die of starvation when their implant was turned on. Implants like this have been widely covered in fiction, and among the scariest drugs possible.
A close analogue is medical records; when HIPAA says patients should be able to access data for 10 years, that means “even if you go out of business”. Companies need to set up escrow that’d cover the cost of later retrieval.
>… who would ever buy a neural lace from a startup — or even an established company like Google who might just lose interest — if there was no guarentee of patches and maintenance?
Of course there’d be a guarantee: 5 years of security updates for your neural implant until you need new hardware.
Golly, that almost sounds completely fucking crazy until you realize it’s already their current policy for smartphones-which arguably already serve a similar role. That’s up from thee years previously. I think it was even two at one point.
This sounds right. People in desperate situations shouldn't feel forced to make high risk bets that could put them in a worse situation down the road. Especially in the US where financial security and health are so closely tied to each other.
Depriving people of desperate bets is arguably worse than letting them take it. Sure it might not work but you’re not the one who has to live with the consequences either way.
> Without some solution like this, it's hard to imagine any non-essential neural implants really taking off: who would ever buy a neural lace from a startup — or even an established company like Google who might just lose interest — if there was no guarentee of patches and maintenance?
Desperate people who are willing to try anything to improve their lives.
Unscrupulous actors have been taking advantage of such people for millennia. You can see it happen today with the proliferation of quack doctors and remedies.
If your quality of life is so low, or you're facing death, taking a chance with experimental treatment might make sense in the moment.
The answer is - there will be no FDA approved neural implants from start-ups. The government would never approve it. If you want to use it before approval, well, that's on you then.
I support this idea, but with an additional element: such private insurances should generally be backed by state funds in case that the insurance company goes bankrupt.
The basic promise of the proposal seems to be that the technology is more of a convenience than a basic need, and/or people who really need it will have the cost dealt with by another entity.
This seems reasonable to me, and can be revised once we have a very good grasp of what actually happens with the technology after a few decades at least.
Sure the price will go up a little, but nowhere near the raw economic damage society at large will pay for people needing to get things like overheating implants removed.
"Governments could provide generous subsidies to reduce the barrier for entry for companies"
Yes, because that went so well in the oil/coal/agriculture/chemistry/electric vehicles industries, creating world-endangering practices and authoritarian moguls. What could go wrong when the mogul can shut down your brain.
It is funny to say the least that even here, a forum of a venture capital company, people expect "the government", the people, to give free money to companies. Has any VC ever given 1 dollar without expecting not only ROI, but ownership? Why doesn't the government own 99.99% of ExxonMobil, Nestlé, John Deere, DuPont, Tesla—they have been pumping venture capital for years, over a hundred in some cases? Right, capitalism, or with other words, socialism for the rich and powerful: all gain, no pain; privatize profits, socialize losses.
This public-private model never worked, perhaps it was never intended to. It's origin is the East India Company, founded December 31, 1600, who, for all intents and purposes, owned the world for a brief moment. Brief mostly due to lack of digitalization and communication latency (London-Bengal around 80 days). The last 400 years have been a stretch of this model, pushing again and again the location of the sweatshops: from the dimly lit, fumes-filled street in the city, to the ghetto, to overseas, as Thomas Smythe [1], governor of East India Company, originally intended. It is particularly funny we cannot even truly imagine a dystopic future where a company gets to own the world, where ownage is the same as helding hostage, for the next 10,000 years since every company is inherently suicidal, another word for something which grows every quarter: cancer.
Here is another solution: have a $1 trillion fund, gather some governments or ask nicely the Norwegian oil fund, fund the research and possible product development for the next 10 to 20 years, and have 100% of the technology be open, owned by all, with 100% of the profits going back to the governments/people. Companies Need Not Apply. You say this has never happened, it is unnatural? Sure it did, you see it right here in action, in this very language that we are using: could you imagine how it would be to have a company license the word "the", to have to pay a subscription for using certain "bundles" of words. Programmatic brain input/output is even more fundamental than language.
There should be something similar to the FDIC for medical device manufacturers. If you're a customer of a bank and the bank goes under, the FDIC will step in to ensure continuity of operations and youre eventually taken up by another bank that buys the assets.
For a company that makes medical devices, part of the bankrupcy process should be a 3rd party company coming in and taking over support and maintenance of the devices. Although this would be very challenging, one of the things that makes it possible with banks is at a high level,the business is the same. With medical devices it would be much much more difficult to find a suitable company to come in and take over operations.
At the very least this story is why we need Right to Repair laws. If not having another company step in to takeover support, at least make the device such that it can be repaired by an independent party
The software industry is fucked from the get-go - you sjould have the right to inspect all software im your body. After all, you have the right to read all patents.
The idea that someone could have code bugs in my body, or a virus running on an implant, or put in functionality I didnt asl for, is basically about as abhorrent as slavery.
>People using the stimulator and their physicians could no longer access the proprietary software needed to recalibrate the device and maintain its effectiveness
Devastating that there is not a higher awareness of this at the outset. Perhaps, along with other suggestions in this thread, it should be obligatory to pair any program with a university to ensure sharing & continuation of knowledge.
> Their Bionic Eyes Are Now Obsolete And Unsupported
It's for this reason that I believe all medical implant firmware and required associated software should be FOSS. Nobody should ever lose the use of something embedded in their body because a company goes out of business.
Yes, the code of these devices should be 100% FOSS.
Also the argument about defending intellectual property doesn't make sense: the software will probably do trivial things and be very simple, that is what you are selling is the hardware itself, and that is already covered by patents.
So making the code public will allow people to find a replacement in the eventuality that the manufacturer stops supporting the product.
This should be imposed by the governments, in my opinion, also for another reason: when the company that makes the hardware device stops supporting it, in countries with a public healthcare system it's the state itself that has to support the patient. How can the healthcare system provide assistance to something that doesn't know internally how it works? How can it go to another company to ask to fix the device?
In the case of the above implant, open hardware specifications would have been needed: the stock of replacement hardware (the computing device worn on the body) is limited. The Spectrum article gives an example of a patient that had to work with his doctor and hunt for unused devices to replace a device that was damaged from a drop.
> the software will probably do trivial things and be very simple, that is what you are selling is the hardware itself, and that is already covered by patents.
How do you figure? In the case of something like an insulin pump or a pacemaker, sure, but once we start interfacing with nerves, especially once we start trying to communicate with them properly instead of just blunt-force stimulating a bunch of them, these devices are essentially software.
That's not to say I necessarily disagree with your conclusion. For devices that depend on patented hardware, opening up the software still works because the hardware effectively acts as a copy protection dongle.
For other devices, or for cases where the software contains critical 'secret sauce', what we need might be something more like the automotive right-to-repair legislation. Even if the device is closed source, the manufacturer must provide appropriate documentation and tooling to allow third parties maintain the device for its intended service life (which, of course, is hopefully a bit longer for a brain implant than for a hatchback!)
For an implant that important, especially one with any sort of network connectivity, I would especially want to be able to see the source code. The repeated very basic security vulnerabilities in Medtronic devices only reinforces this.
The more integral these implants get, the more this feels like "you're not legally permitted to know how this part of your body works".
> The more integral these implants get, the more this feels like "you're not legally permitted to know how this part of your body works".
Imagone the human rights abuses possible with this technology. You could offer loans for digital organs. and if the paymwnt is late you turn organs off remotely!
FOSS software doesn't mean that it has to be free. We have to remember this. It's perfectly fine to ask for a payment to have the source code. Also the fact that the software is free it doesn't mean that it can't still be covered with patents, for example a lot of patented software is free software (think about video codecs, for example, there are a ton of FOSS implementation, still it's patented). Basically you patent the algorithm, not the implementation, that is anyone that uses it still has to pay you royalties, but anyone can produce it.
If you think about it, it's the same thing with drug formulas: after a period of exclusive then any company can produce it, of course paying the royalties to whoever owns the patent. It can be the same for software. Of course we have to talk about algorithms that are not trivial, as it's the case on most medical devices (most firmware just does very trivial things, that could be in principle be done by dedicated analog circuitry)
It depends on the device, but it's not necessarily true that the software behind it is trivial. Interfacing with the human body is tricky and knowing how to use the hardware to make the most of the limited set of electrodes or whatever interface the device has is complex.
I can't see a requirement to be FOSS working due to those who fund such companies expect to have dividends, even universities. But at least if it's published, and with stronger right to repair laws, there is some chance rather than none.
Seems like the implants (hardware design and any software) need to be the equivalent of open source (in the GNU sense).
Failing that, hardware designs, and the software - along with all necessary instructions - at least have to be put in escrow in the event that the company goes under. That would not immediately help, but at least there would be a fighting chance... As in this case to still be able to have someone fix/use the software to calibrate the implant.
This should be standard regulation for approving such implants.
And this can and should be paired with the other suggestions here such as mandatory insurance, etc.
I would accept that all details are CCd to a govt office to be released if the company folds and it's obligations are not continued by anyone internally. And that any company buying said company needs to demonstrate intent, motivation and financial ability to maintain said products.
Counter to the rest of technology where devices are literally designed to fail, this cannot be acceptable for embedded electronic devices.
The design, documentation and especially source code should only be ever made available to entities with the knowledge and skill to maintain these implants safely and purely for the benefit of the users. If any random Joe Garage Hacker can get the source and devise patches for implant devices, the result will be an endless hellish nightmare for whoever has these implants in them. It'd be the IoT mess all over again, but with people's bodies, not just their homes.
That's just an argument for why it should be open source from the beginning: let bugs be spotted early and be sure the designs are as secure as we can make them before somebody gets saddled with one in their skin for life. Security through obscurity is not the answer.
That's exactly why the source code cannot be open to hacking by random people who suddenly wake up to a feeling of being qualified to work on something like that. There's a a general attitude of overconfidence among software developers that extends into other areas of expertise that they actually know nothing about. HN reflects this very well. And that's exactly why some things can never be allowed to be fully open.
To whoever reads this comment, just ask yourself this: how much vetting and testing do you want for the code on a pacemaker or insulin pump? Do you think you can perform that level of testing at home? If you think that you can, you're exactly the kind of dangerous person that can't be allowed to mess with this stuff.
I think we may be imagining different scenarios. I was operating under the idea of a company opening its code up to public scrutiny with enough time to accommodate any changes suggested by qualified members of the public. It seems you're imagining a world where medical devices are homebrew with no centralized authority?
I wonder if closing a company should require some kind of process similar to bankruptcy. Then have an external party check to see impacted parties of the closure and provide some form of relief to stakeholders. In the case presented here maybe schematics for the device and proprietary software would be made available in perpetuity without support or code.
What is the actual failure mode of these companies? The article cites ATI, Nuvectra, Second Sight, Stimwave.. were these companies expecting govt grants that never arrived? Did they overestimate how much patients would pay for these implants? Misjudge how much they could bring prices down? Were their devices one-and-done treatments so they had no renewable income?
Some of these companies were making truly life-changing tech that only exists because they made it exist. It's disheartening to read about them going under.
As for how to handle ongoing support for the patients of companies that do go under, the article already says all my thoughts on it.
> One proposal is that neurotechnology companies should ensure that there is money available to support the people using their devices in the event of the company’s closure. How this would best be achieved is uncertain. Suggestions include the company setting up a partner non-profit organization to manage funds to cover this eventuality; putting aside money in an escrow account; being obliged to take out an insurance policy that would support users; paying into a government-supported safety network; or ensuring the people using the devices are high-priority creditors during bankruptcy proceedings.
> Realeve’s interim chief executive Donato thinks that it will take legislation to convince investors or shareholders in companies to take on the expense of a safety net. “Unless, and until, the governments force it on us,” he says, “I’m not sure companies will do it on their own.”
This scenario is where free market fails and some more legislation is needed. There needs to be a backup plan. For this and for the scenario where they get taken over and price jacked up.
> "People using the stimulator and their physicians could no longer access the proprietary software needed to recalibrate the device and maintain its effectiveness"
How is that even possible ? I would have expected that there would be proper regulations (either there is another company that would follow-up, or the aforementioned proprietary software would have to be open-sourced...)
This seems like a problem long-term support contracts and medical insurance should be able to make a non-issue. Obviously, if someone undergoes an experimental medical treatment, the company performing the test should bear the responsibility of paying to have it removed should they go out of business or when the trial ends. If for some reason the company is unable to pay for corrective medical treatments, they should be required to have insurance. I'm not sure what the current rules and regulations are when it comes to this sort of stuff, but it really feels like all that's needed is a minor tweak so people do the sorts of things they should have been doing all along: planning financially and medically for the entire lifetime of the implant using the ethical rules and financial instruments we've already invented for dealing with risk and responsibility.
Pain is information. Instead of trying to manipulate the brain into not feeling it, we need to be figuring out the cause and fixing that.
These ooh, shiny med tech solutions are likely on such shakey ground in part because the mindset that says "Hey, what can we build and sell to make the pain go away?" (instead of wondering what causes the pain and fixing that) is exactly the kind of thought process that turns a blind eye to the big picture and the long term. Such a mindset is not really good for genuinely addressing health issues.
In response to the dead reply to me (that I don't plan to vouch for): No, I don't assume all med tech is made in bad faith.
There's a lot we still don't know about the human body. Our current inability to establish cause may be a defect in our knowledge base, not evidence that "there's nothing actually wrong."
You are correct in that pain is a kind of information. I am going to be quite cross with you: you lack both medical experience and, well, imagination to understand why that information might be blocked by its recipient, why not all information is valuable. You have traded empathy for the quasi-magic Star Trek fix, so far in the future. You have forgotten the short-term in your look ahead to the long-term. Pain can be brief, pain can be long, pain can come in waves. I have a lot of experience with it.
Right now, for me, here is the valuable information: You are dying slowly of a very rare, incurable metabolic disorder.
Sometimes I wake up in the middle of the night because you are dying slowly of a very rare, incurable metabolic disorder. I might struggle to keep a grimace from my face at Thanksgiving dinner at a sudden stab, or in a meeting because you are dying slowly of a very rare, incurable metabolic disorder. A rare moment of levity is spoiled because you are dying slowly of a very rare, incurable metabolic disorder. At times the message becomes constant and disruptive not merely to a good mood, but competent thought, or even much thought at all. It can be so loud and wearying that, lacking medication, I will tumble to the ground and injure myself; even as I cradle my knee, I am also told you are dying slowly of a very rare, incurable metabolic disorder.
Now, I no longer have sessions where I am shrieking into a pillow and the ER visits are few and far between because I have been managing this for a long, long time. I avoid triggers and maintain a frankly bizarre "diet" which is hurting me in other ways because I am tiptoeing around a very rare, incurable metabolic disorder that is demanding and fussy as an infant with colic, if there was also some kind of sound-activated device which hurt you every time the baby cried. Even the most rigid avoidance of triggers and the greatest compliance will still not bring it to heel. Originally, the information was new and fresh, and caused me to do a lot of research and homework, but there's nothing more informative about you are dying slowly of a very rare, incurable metabolic disorder as it stands today.
The science to deal with this was science fiction when I got it, and is decades away now. But still ... you are dying slowly of a very rare, incurable metabolic disorder.
I have been receiving this message for more than thirty years. Tonight, the message you are dying slowly of a very rare, incurable metabolic disorder is repeated and loud and I will have to sort through nasty Schedule II drugs, estimating what I can get away with until my next refill (and they seem to happen more frequently) to see if I can't turn down the volume on this information. Soon I will "graduate" to something like dilaudid, which is more potent, needed because you are dying slowly of a very rare, incurable metabolic disorder is just a little louder, a little more urgent, every month. I can still see the unhappy microexpressions crossing my physician's face when I suggested he begin to look into a celiac plexus block, which essentially "burns out" some nerves temporarily, at some great costs, for when I need it in a few years, after the much-lamented fentanyl patches will not be enough to cover you are dying slowly of a very rare, incurable metabolic disorder. It's a risky and unattractive procedure, with a ton of side effects, but it does keep down the screaming.
Not all information is that great.
I am dying slowly of a very rare, incurable metabolic disorder.
The suffering and loss of function are the problem.
Sure, total causal knowledge and a perfect treatment would be nice. But until we have that, ignoring partial solutions in the name of medical research purity would be deeply irresponsible.
Sure, total causal knowledge and a perfect treatment would be nice.
We won't get it if we never bother to look for it.
I'm not arguing for cruelty. These articles make the front page of HN precisely because our current approach is so broken that people find the results horrifying.
Why do you think no one is bothering to look for it? I can go on Google Scholar right now and find thousands of articles exploring the causes of cluster headaches or anything else mentioned in the article.
I'd expect a comment like this on Facebook, not here.
Yours is a "Natural human" take that assumes every piece of medical tech was made in bad faith. How sad and cynical and absolutely untrue.
>Pain is information.
It can be NULL information, too. or WRONG information. Dude was having cluster headaches for 8 hours a day. Do you have a cure for cluster headaches? Are you able to interpret this "Information"? How arrogant!
If they had a cure or a magic wand it would have been done by now.
Neurotechnology is one of the most interesting fields in this century, to think of the fact that our mind is more powerful than computers, and we don't know everything about it.
Except for the fact that it costs millions to create technology for our brains, it's such a big gamble. And neurotechnology failure happens in most cases since we don't have enough data to make predictable guesses.
If this topic interests you and you have a minute, watch this original news footage of Jose Delgado’s wireless EEG+stimulator, the “stimoceiver.” 1960s remote mind control shows the ethical craziness of the whole domain.
Governments could provide generous subsidies, tax breaks etc. to such funds to reduce the barrier for entry for companies.
Without some solution like this, it's hard to imagine any non-essential neural implants really taking off: who would ever buy a neural lace from a startup — or even an established company like Google who might just lose interest — if there was no guarentee of patches and maintenance?