Why I’m turning my son into a cyborg
qz.com
qz.com
Source: A friend of mine is part of a insulin pump hacking community
But all things aren't equal. Most of the people doing the hacking (I know a few as well) are already intimately familiar with the biology and consequences, and are already constantly monitoring themselves, or their children and loved ones. They're the best people to test this stuff.
And, like you said, there are compliance issues with children and all sorts of bad things happening already, like devastating lows, diabetic comas, chronic sleep deprivation, etc. The closed-loop and automated systems already reduce these things and improve quality of life for all parties involved. Also the companies are taking forever and may have a vested interest in maintaining their products the way they currently are.
If all things were equal, I could understand the disdain and caution for the device hacking. But they're not.
It was just yesterday that an (adult!) allistic friend of mine was posting on Facebook looking for advice on treating her kidney infection without antibiotics. Her irrational allistic friends were giving her all kinds of ridiculously terrible medical advice (“Alka-Seltzer cleared up my UTI”), and I looked up the clinical practice guidelines and yelled at her to GET ANTIBIOTICS.
I disagree with this argument that commercial performance enhancement will destroy social mobility. The effect would be strongly dependent on the economics of such a market. Conversely, an efficient market in a new technology can be democratising.
If hypothetically an inexpensive brain-computer interface could give a person access to information in a way which substitutes conventional education, then this could negate the preexisting socioeconomic divide which education creates. Particularly conventional education is unavoidably expensive because it involves labour on at least the part of the student, whereas the cost of a neuroprosthetic device, as with other electronic technology is diminishable.
> If hypothetically, a brain-computer interface were to exist, it would likely reach individuals that are well-off first.
While often true for technology generally, medical technology has special considerations. Rather than simply reaching the well-off first, performance enhancing neurological implants are likely to reach the disabled first, where it is deemed ethically more acceptable, as has been the case so far. Due to public healthcare, health insurance, and research contribution, patients' wealth is not always crucial here. It may be the case that costs reduce greatly before non-medical uses become acceptable. In the case of BCIs, the acceptability of their non-medically necessary use cases would likely depend of the technology's maturity.
The extent to which market differentiation is possible is not yet clear for such technology, particularly if the market is competitive. Tiering is typically based on either having a unique product (e.g. nobody else can make an equivalent) which can be artificially crippled, or natural differences in production quality (e.g. only some cores of this processor work).
From the snide "hope there's no bugs" Titanic joke about an insulin pump -- This is a real mom and a real kid you're talking about. You think you're the first person in the room who's read about the Therac-25?? Do you think a snide joke implying catastrophic consequences is appropriate in this context!?
To the apophatic "almost as if she is performing research on a human child when they are not of the age to consent" which raises missing the point nearly to the form of art... almost as if you had memorized a handbook of research ethics guidelines but yet somehow completely forgotten why we do research in the first place and what technology is even good for!
Then we have the comments whining about the author mentioning other work she's done (like having built this stuff for much of her professional career is somehow irrelevant to having thoughts on what the risks and opportunities are?) as though it were pure self-promotion. And the funny-if-not-sad, "Why isn't he turning HIMSELF into a cyborg but his son?", missing both the author's gender and her point. If you'd glanced at the byline or even the author bio before commenting, you could hardly have missed that the author is a woman, not any kind of a "HIMSELF". And maybe, just maybe, if you had read the article just a little more carefully, it would have occurred to you that she is turning her son into a cyborg and not herself because her son is the one who has autism.
> I don’t want to “cure” someone of themselves. Especially not my son. I want them to be able to share that self with the world.
There is fascinating, thoughtful stuff here touching technology, medicine, science, religion, parenting, and ethics, and there are discussions we could be having around these issues, but first we have to actually engage with what's being said.
> I find the top-level comments here on the whole shockingly negative, uninformed, wildly speculative, and even downright spiteful.
Welcome to the Internet
I'm not saying the article is great, but that the comments here should be better.
Also (for the christians out there), as someone who believes in the Fall of Man, we are all broken in some way, so every enhancement that brings us closer to the way we were created (in God's image) is actually damage repair, even brain implants to bring us closer to health and holiness. My only doubt is whether we have the wisdom to pull off a work that seems to belong to God.
The other things she talks about, such as helping autistic people recognize emotions, could be enormously beneficial and much less potentially harmful.
My understand of part of the autism spectrum is difficulty empathizing, not being able to understand cues of emotion. I have the benefit of being able to understand pretty well that words I've just spoken or actions I've taken have hurt somebody's feelings. If an AI can flash up an image of "this person is now sad" right after someone lacking that ability has done or said something, they have the opportunity to apologize or say it differently. That could greatly improve their social interactions and personal happiness.
Someone had to write the software that runs on her kid's insulin pump. If you could make it better and had the resources to do it right, you'd probably find it less insanely dangerous and more like the obvious way to approach the problem.
Interestingly, if her working memory device is as good as she says, it may have serious potential as a non-chemical treatment for ADHD.
> Be kind. Don't be snarky. Comments should get more thoughtful and substantive, not less, as a topic gets more divisive.
> Please respond to the strongest plausible interpretation of what someone says, not a weaker one that's easier to criticize. Assume good faith.
This comment is not constructive; if you disagree with the parent's assessment, please explain how and why in order to stimulate meaningful discussion.
Wow, hope there're no bugs in that one. I'd hate for the kid to be weeping over Titanic and get od'd with insulin.
https://www.webmd.com/diabetes/news/20190628/fda-recalls-ins...
You're not going to squeeze a lifetime worth of lost salary out of a random Redditor who told you how to tweak your insulin pump.
Because the risk is worthwhile at times.
The exceptions typically apply to rare diseases that impact a population too small to be profitable enough to justify the $1B or more it may cost to shepherd a device or medication through the normal process.
These are populations who would be potentially unserved otherwise. (I'm of the personal opinion that this is where the government should step in instead of private industry, but I'm pretty left of center.)
https://www.fda.gov/industry/developing-products-rare-diseas...
IIRC, an exception of this sort was used to expedite an Ebola vaccine due to the recent outbreak... because, well, Ebola.
I spent a year hooked up for 8 hours a night to a CPD dialysis machine - I read the massive manual and there is a long section on what can go wrong including "Death" - no way would I start hacking on that.
Though I did think about using a camera and ML to monitor the waste output for signs of contamination.
How many episodes of hypoglycemia do you think one needs to have, in an utterly broken healthcare system in which being ordered paramedics and given sugar pills costs you $XXXX per occurance.
And if you're gonna talk to me about responsbility and healthy living please join the real world some time.
That's why people choose to take actions into their own hands. Because being a victim of a system that just doesn't care enough leads you to either take the handles or down under.
All power to these knowledgeable, individuals, for doing something dangerous but potentially great. This is HN, full of smart people who understand the risk of failure and will monitor the crap out of their system and adjust and tinker until it's ok. The problem is people making tutorials and publicizing their work, which leads to people not as smart following their tutorial and thinking it will be alright.
There are tons of papers on closed-loop systems, and probably clinical trials are happening as I write this comment. Medicine isn't one of the industries to "disrupt" though, as much as people on here want to believe.
There's so many pitfalls here where teams of engineers with the whole part spec and from different disciplines have failed before. It sounds very dangerous.
Either way, I agree I'm not really subscribed to the idea that DIY life critical systems are a good idea beyond POC.
Not enough is also bad but hopefully they'll notice and can act accordingly - still a threat too though.
It's not that we're all saying this is an unsafe machine, we're saying that a random person DIY'ing and using such a solution is very risky, there's a reason why commercial medical equipment requires rigorous testing/certifications, etc.
This does become a serious problem when it gets into the hands of people who don't know what they're doing, if they're convinced to trust the tech because "obviously the smart people working on it made sure it's safe".
>This doesn't mean that we shouldn't do it.
Why should she put her son at risk for a science experiment?
If it seems horrible, that's because the reality that diabetics have to live with is horrible.
Prior to this pump + Dexcom, he had a Medtronic 530g + glucose monitor. It was not internet connected out of the box, it required a $100 gadget that would transmit his blood sugar to his cell phone and then to medtronic's awful website. Fortunately folks developed Nightscout to scrape Medtronic's website and provide a much better experience. With Dexcom being a much more modern option (the CGM transmitter has built-in bluetooth) - we don't really need Nightscout, but it's convenient for me to watch his sugar on my 2nd monitor when he's at school (he's only 7.)
The problem is not in my opinion regulatory processes or clinical testing. It's been simply a lack of urgency/competition. Beta Bionics has started to make Medtronic and other competitors step up their game in recent years. https://www.betabionics.com/
The FAA does however have a parallel track, called Experimental-Amateur Built (E-AB) where if you build the airplane yourself for educational or recreational purposes, it’s subject to a mostly separate set of rules. They are generally more relaxed in terms of what maintenance and modifications you can do but stricter in terms of what you can do while flying (can’t take passengers for hire, for example). Most pilots prefer the certified/safety-first/highly regulated track, but the government recognizes it’s a trade-off and offers the other option for those who prefer a more DIY-friendly world.
Not saying this would necessarily work for medical devices, but there is precedent for acknowledging the trade-offs when it comes to DIYing safety-critical stuff.
plenty of closed loop feedback systems we are all hooked up to which can malfunction and kill you.. casually thinking of automotive industry I can come up with:
- abs brakes - engine control units - transmission control units - power steering - traffic lights
and that's just one sector, let alone aviation, mass transit, power plants, etc etc etc.
granted the malfunction:fatality ratio is probably different, but not so altogether crazy to think that 'closed loop is impossible' .. though perhaps you are strictly speaking w/r/t regulatory climate..
that said, we have had pacemakers for many years..
The FDA is setup to optimize survival not quality of life. The standards will be much higher for these pumps.
So, given that whatever decision they make will kill masses of people, regulators have very strong incentives to kill them by being too restrictive, rather than kill a different mass of people by not being restrictive enough.
The solution to this problem is clear: the person with the strongest incentive to keep you alive is you. Any regulator or drug-company executive will reliably put other considerations above your survival under some circumstances. So, except in cases of people who really cannot be trusted with life-and-death decisions — children and some severely mentally impaired people — you should have the final say on what medical treatments you try or don't try.
In short, the whole regulatory structure should be scrapped. We still need clinical trials, but not before new treatments become available; after.
This sounds like a radical proposal, but in fact it's how the process worked in the US during the time that we owe most of our revolutionary medical treatments to, the 1920s through the 1960s. That's when most (all?) of our currently marketed antibiotic families were discovered, when one dude spent a couple of years prototyping the pacemaker in his barn and then convinced his friend at a hospital to start trying it in patients, when artificial joints were developed. We're still coasting on the legacy from that era.
Semi-closed control "dumb" programmable pump, that is. Human is in the loop, it is not realtime so potentially worse... Or not. Few and predictable failure modes.
There are even insulin pump firmware online.
Many parents use tools to do this monitoring remotely for their child's system. I believe that if you have access to the source code and possess the knowledge to understand it and debug it, the improvements to the child's life are greater than the risks you take.
The sentence about "emotions and activities" is a little misleading. It reacts to the data from the CGM. But yes, blood sugar changes with emotions and activities. That's the life of a type 1 diabetic, no matter if you use a closed-loop system or not!
I'd hate for the kid to be weeping over Titanic and get od'd with SUGAR.
BUT I find a very disturbing thing being glossed over. The son can't consent to this experimentation.
That's where I draw the line. You can hack away on your own devices all day. You know the risks involved, or at least are aware that some do (it's hard to know all the risks with anything medical). But hacking away on a minor's device isn't just risky, it is unethical. There's a reason this type of thing is hard to get passed a experimentation review board. I know the parent can consent for the child but there are limits to this (like that a parent can be considered endangering their child if they don't vaccinate). I know there is likely low risk in this type of hacking, but unless the upside makes a substantial quality of life difference (I don't know what it's like to live with type 1), it is concerning that you would risk a child's health. When it comes to health I think there's a good reason to be conservative.
Once an adult (I'd even find that fine with a 16 year old) I think the equation changes. Hacking away is good, but we also need ethics.
Accepting the built-in device software is also an "experiment."
Being conservative does not always mean accepting the status quo.
An experiment with substantial testing and one that is legally backed if something is wrong. These are class 3 FDA approved devices, which means they have rigorous testing. They aren't just FDA cleared.
So calling them an "experiment" is really understating it. There's a huge difference between an experiment with one participant and done by someone without formal medical knowledge and many experiments with large sample sizes performed by several medical professionals who are experts on the specific device at hand. The two aren't comparable, and it's a ridiculous notion to equate them.
In the context of my statement, being conservative means accepting lower risk.
1. Take a "dumb" open loop controller. f(t).
2. Take a "smart" closed loop controller that reads glucose levels, f(t) and outputs g(t), a correction term.
3. Clamp the correction to a safe range to get h(t)
4. Output f(t) + h(t)
If the closed loop controller crashes, the output is f(t). If the closed loop controller goes haywire, the output will be safe.
Do my son's engineered superpowers make him more human, or less?
The more different you are, the more valuable you become.
My particular area of research and development is cognitive neuroprosthetics: devices that directly interface with the brain to improve our memory, attention, emotion, and much more.
How can we respect someone's humanness while also giving them the choice to become more like the majority of humans?
In a world that values difference, untypical humans paired with neuroprosthetics might become even more powerful than fully abled ones.
If these kinds of augmentations can lift them above the crowd, soon everyone will want to be more than human.
It's seductively easy to imagine a world in which we're a little smarter or a bit more creative, in which our kids have the latest advantage.
Theres a line to be drawn here and it depends on the functionality of the implant. Implants that restore normal function versus implants that do something else which healthy humans could not achieve without.
Yes, it is certainly useful to differentiate between normal ranged human properties, and those so far exceeding the norms we have zero evidence on what to expect.
(So far the evidence seems to point towards the notion that you can't increase human performance by pushing along a single axis. We are near a local optimum in a massive, multidimensional space. Pushing too much in any one direction will move us farther from the local optimum.)
We're facing this everyday with rich and powerful making likely bad choices, for themselves and for others. Why would any other kind of superhuman be different?
The question is only of magnitude - what could one person do? How would they do it? What would be the cost or benefit?
This doesn't directly imply that interventions that make someone "less human" should be avoided.
That's not a rationale, that's just a criterion. My question is, "What is the rationale for avoiding these types of changes?"
Where is that limit achieved? In the case of prosthetic limbs, should we seek to achieve perfect organic behavior replicability, or is anything further than that inhuman in some arcane way? Oscar Pistorius, AKA Blade Runner, earned Olympic medals despite having prosthetic legs. Is he advantaged or disadvantaged compared to other participants?
The anime series Texhnolyze touches heavily upon this subject, amongst others.
Most people don't even know what human means, this idea of superpowers affecting your humanity just means you didn't grow beyond comic book stories.
>The more different you are, the more valuable you become.
Only in blind people's eyes who can not even see that every atom in this Universe is unique. How can you be more (or less) different than that?
>How can we respect someone's humanness while also giving them the choice to become more like the majority of humans?
There is no majority, only individuals. It's just an image in your mind if you travel around the world a bit you will see how limited this is.
>In a world that values difference
Maybe it's time to stop calling your neighborhood a world? :)
>It's seductively easy to imagine a world in which we're a little smarter or a bit more creative, in which our kids have the latest advantage
Kids have an advantage in every generation. The question is how being a little smarter or creative is going to make you happier? The story tries to connect this to being different, "above the crowd". But if everyone is above the crowd then there is no crowd and nobody will look up to your difference. It's a dead-end in many ways, but peace, happiness, joy, bliss - it is all real and they have nothing to do with how others look on you.
Injecting insulin according to the emotions might give bad clues on how you "should" feel in each situation.
And if you can feel it, your body can learn to modulate your mood and feelings to get (or to avoid) another dose.