@pheras “Möllmann-Bohle, meanwhile, turned to skills he developed as an electrical engineer. In the past three years, he has repaired a faulty charging port on the hand-held portion of his device and replaced its inbuilt battery several times. This battery was never intended to be accessible to the user, and it turned out to be unusual. Möllmann-Bohle scoured the Internet and eventually found suitable replacements made by a firm in the United States. When he returned for more, however, he learnt that the company had stopped making them. His most recent replacement came from a Chinese company that custom made what he needed.“

this not only says a lot about Intellectual Property™®© and its lack of ethics, but also about how hard preserving right to repair is anyway… society still has a long way to learn

@pheras this reminded me of some of the talks that @conservancy gives about this very subject. @karen gave this talk.

https://invidious.fdn.fr/watch?v=qW1h1s_ojpM

@pheras

Cory Doctorow @doctorow full-on predicted this years ago: What happens when the companies providing healing meds/tech abandon their miracle cures?

We're all cyborgs or will increasingly become ones as we age. Between them, my parents have bionic knees, eyes, ears, hearts, & livers.

Shouldn't these devices have SLAs (service level agreements) that extend beyond the life of the corporations that built them? And barring that, they MUST be open source.

@eff

@pheras There's also the point that many of these devices are *quite* hackable. And programmable via radio.

Pacemakers programmable by radio with weak to no security. Implanted insulin pumps programmable by radio with weak to no security.

Look up some DefCon talks on medical implants if you want reduced sleep quality.

@pheras @ZaneSelvans

Chilling. If I ever need one I hope there will be an open source option.

"Peckham plans to make the design specifications and supporting documentation of new implantable technologies developed by his team freely available. “Then people can just cut and paste,” he says."

@pheras "The human cost of neurotechnology failure" .. why is that in the title, it is about companies failing, not technology. The technology was probably going to need maintenance anyway.

Open source might have mitigated, but only solves it if the know-how and resources to use that information is there.. (and as it mentions, insurers are likely to not co-operate with non-institutional sources)

@pheras Wait! I thought this was the premise of a movie and your post was a review.

I’m not shitting you! I’m blown away that this is reality!

@pheras

Abandoned
The human cost of neurotechnology failure

#ResearchEthics #MedicalDevices #Neurotechnology

https://www.nature.com/immersive/d41586-022-03810-5/index.html

@pheras there was a largish report about this last year or so, including a huge black market for used parts, regarding a pixelated vision solution for some kinds of blindness whose vendor vanished as well

complete with video documentary

but I don’t recall where or how it was named

@pheras this has got me thinking about my mom and the experimental treatment she went through for her Parkinson's.

While the treatment was still supported, it wasn't easy to get info to the nursing home about how to get the battery charged when she suddenly needed 24/7 skilled nursing care.

@pheras Similar story in IEEE Spectrum recently about obsolete “bionic eyes.”

https://spectrum.ieee.org/bionic-eye-obsolete

@pheras I made provisions to address this problem with my software-only solution for functional vision that runs on commodity (replaceable, affordable) hardware https://twitter.com/seeingwithsound/status/1507083141437136899 #The_vOICe sensory substitution

Edit for when Twitter vanishes: https://web.archive.org/web/20211225143619/https://www.seeingwithsound.com/webvoice/webvoice.htm

LB which is why you'll never catch me using Musk's "neuralink" or anything else. I've got zero interest in elective cybernetics or bionics of any kind.

Even something like a pacemaker I'd want to research the device manufacturer and support to make sure I'm not signing up for an implant that can go out of support leaving me with a malfunctioning device inside my body.

@pheras Holy shit I don't think I realized this was already a thing...

and it's the sort of thing that's really only going to keep happening unless the government takes steps to force these companies to make their stuff open.

@pheras See also "Their Bionic Eyes Are Now Obsolete and Unsupported

Second Sight left users of its retinal implants in the dark"
https://spectrum.ieee.org/bionic-eye-obsolete