The human cost of neurotechnology failure

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.

There already is, one example is the VNS implant.

> 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!)

Perhaps mandate a trigger? In the event of bankruptcy, implanted medical device firmware and hardware designs enter the public domain.

Patients’ interests should take precedence over creditors and investors.