Doctors Remove Woman’s Brain Implant Against Her Will

Submitted ⁨⁨2⁩ ⁨months⁩ ago⁩ by ⁨MattW03@lemmy.ca⁩ to ⁨aboringdystopia@lemmy.world⁩

https://futurism.com/neoscope/brain-implant-removed-consent

A woman whose epilepsy was greatly improved by an experimental brain implant was devastated when, just two years after getting it, she was forced to have it removed due to the company that made it going bankrupt.

As the MIT Technology Review reports, an Australian woman named Rita Leggett who received an experimental seizure-tracking brain-computer interface (BCI) implant from the now-defunct company Neuravista in 2010 has become a stark example not only of the ways neurotech can help people, but also of the trauma of losing access to them when experiments end or companies go under.

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TheWeirdestCunt@lemm.ee ⁨2⁩ ⁨months⁩ ago
Oh great so even physical ownership doesn’t even mean you own something anymore

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- dono@lemmy.world ⁨2⁩ ⁨months⁩ ago
  As much as I share this sentiment in general, in this case its probably more likely that this has something to with liability if something goes wrong with the implant. And I would bet the company never released the schematics and code so that aint helpin.
  
  Could prob be solved if implants would be required to be open source so that third party servicing could happen.
  
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  - lolcatnip@reddthat.com ⁨2⁩ ⁨months⁩ ago
    Companies that aren’t actively using their IP should be forced to license it to someone who will, or put it in the public domain.
    
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- Eatspancakes84@lemmy.world ⁨2⁩ ⁨months⁩ ago
  I am guessing/hoping that the device needed maintenance and since nobody can maintain it, it’s removed for safety reasons. I think They wouldn’t perform surgery without such a safety need.
  
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- athairmor@lemmy.world ⁨2⁩ ⁨months⁩ ago
  Sounds like she was in a trial so probably didn’t pay for it and doesn’t own it.
  
  It’s still kind of fucked up that she has to have surgery to remove it but she probably agreed to these terms before it was installed.
  
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- yggstyle@lemmy.world ⁨2⁩ ⁨months⁩ ago
  The BEST timeline.
  
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Observer1199@lemmy.ml ⁨2⁩ ⁨months⁩ ago
Clickbait title for extra sensationalism. Nobody physically forced her to have the surgery to remove the implant.

I sympathize with this woman however it was part of the trial for it to be switched off and removed at the end of the trial, which is what she agreed to, though it does raise a lot of questions about medical trials/procedures involving implants.

If the company no longer exists but let her keep the implant, what happens when something goes wrong? Who is responsible, who do medical professionals trying to help with what went wrong contact for context, who bears the cost, what happens if it’s hacked, etc etc. If it was left in and she ended up dying, it’s guaranteed that headlines will talk about it being irresponsible and medical malpractice.

Fwiw, reading the MIT review, this device didn’t prevent her seizures, but monitored brainwave activity and used an algorithm to predict the likelihood of an imminent seizure. She seems to have been an edge case in terms of successi in the trial.

It seems the issue is that this gave her confidence to leave the house to do things. Prior to that she very rarely left the house because of the unpredictability of her seizures. It must suck to have that confidence, and therefore freedom, taken away.

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- Dasus@lemmy.world ⁨2⁩ ⁨months⁩ ago
  
  It must suck to have that confidence, and therefore freedom, taken away.
  
  It does, yeah.
  
  Thanks for the comment, I was sitting here shitting, thinking how exactly did a company force someone to have brain surgery. Very sensationalist indeed.
  
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- RestrictedAccount@lemmy.world ⁨2⁩ ⁨months⁩ ago
  Did you read it?
  
  She and her husband attempted to fight the demand, attempting to buy the implant outright and, as University of Tasmania ethicist and paper coauthor Frederic Gilbert told the Tech Review, remortgaging their house to do so. They were unsuccessful, and she was the last person to get the Neuravista BCI removed.
  
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norimee@lemmy.world ⁨2⁩ ⁨months⁩ ago
As a nurse I find it very problematic that they could force her to have brain surgery to retrieve their property.

It might be understandable that they turn it off or stopp support, if it was experimental and the device didn’t pass the necessary aprovals.

But forcing her to have an invasive procedure on her brain with so many dangerous risks. This should be illegal.

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- peopleproblems@lemmy.world ⁨2⁩ ⁨months⁩ ago
  Yeah theres a lot here that stinks, I’m going to have to find more sources on it.
  
  This clearly violates informed consent, and a whole bunch of study related laws, and laws involving patient care and risks of invasive procedure.
  
  She had to agree to the surgery to remove it at some point, and it could not have been in informed consent documentation, because she could have revoked that agreement before the surgery.
  
  I doubt this story. I really doubt this.
  
  However, I don’t know shit about fuck about Australian law.
  
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  - chicken@lemmy.dbzer0.com ⁨2⁩ ⁨months⁩ ago
    One relevant detail is that this was not a self contained device, it was for monitoring likelihood of seizures and had an external wireless interface. So my guess (this is pure speculation) on what happened is, the company owned the monitoring device, and the signals from the in-brain device were proprietary and encrypted. They couldn’t force her to have surgery but they could take back the external interface which was their property, and without that the in-brain device did nothing. Then the patient agreed to surgery because there was no further benefit to keeping it in her head and probably greater health risks to doing so.
    
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  - ShepherdPie@midwest.social ⁨2⁩ ⁨months⁩ ago
    I’m sure if she revoked the informed consent they never would have done the implant to begin with. It’s an experimental procedure so you kind of need to agree to being expiramented on to participate.
    
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- uriel238@lemmy.blahaj.zone ⁨2⁩ ⁨months⁩ ago
  An awful lot of EULAs (software or otherwise) include odious clauses or terms easily misused. I daresay even most, since US and international contract law is heavily biased towards industrial corporations being permitted to include and enforce such terms.
  
  Often, court cases are about arguing that a clause in question is, in fact, odious and u enforceable without causing undue suffering.
  
  If the patient dies or suffers permanent health effects from the extraction surgery, I anticipate a wrongful death lawsuit may well follow.
  
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  - Cypher@lemmy.world ⁨2⁩ ⁨months⁩ ago
    Such EULAs are often pointless in Australia, and she is Australian, as it is impossible for an Australian to sign away any of their rights.
    
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- Madison420@lemmy.world ⁨2⁩ ⁨months⁩ ago
  I mean if she agreed to it by contract there’s not much to argue.
  
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  - treadful@lemmy.zip ⁨2⁩ ⁨months⁩ ago
    You can’t just put anything in a contract and say you can’t argue it.
    
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uriel238@lemmy.blahaj.zone ⁨2⁩ ⁨months⁩ ago
She and her husband attempted to fight the demand, attempting to buy the implant outright…

It was compulsory brain surgery for a repo.

In other words the company interests superceded the patient’s

This is the sort of inciting incident that triggers cyberpunk dystopian adventures that conclude in a blaze of electrical grid collapses, warehouse explosions and mass spiritual awakening. Then the protagonist moves to Amsterdam.

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- TSG_Asmodeus@lemmy.world ⁨2⁩ ⁨months⁩ ago
  
  It was compulsory brain surgery for a repo. … This is the sort of inciting incident that triggers cyberpunk dystopian adventures
  
  Sure is.
  
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  - PM_Your_Nudes_Please@lemmy.world ⁨2⁩ ⁨months⁩ ago
    That was my first thought as well. Glad to see it posted, because it’s sort of a niche cult classic.
    
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  - Bimfred@lemmy.world ⁨2⁩ ⁨months⁩ ago
    Fingers crossed this woman doesn’t end up with a Zydrate addiction. It comes in a little glass vial, you know.
    
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- MystikIncarnate@lemmy.ca ⁨2⁩ ⁨months⁩ ago
  Reminds me of repo, the generic opera.
  
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deathbird@mander.xyz ⁨2⁩ ⁨months⁩ ago
I feel like maybe research on medical implants like this should be done by the state.

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- Duamerthrax@lemmy.world ⁨2⁩ ⁨months⁩ ago
  At least, when the company goes defunct, they should be forced to sell it to a company that’s required to maintain the upkeep for products using the IP they bought or the government should eminent domain
  
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- Allonzee@lemmy.world ⁨2⁩ ⁨months⁩ ago
  So should a lot of research, for public benefit. Medical absolutely, space absolutely.
  
  The problem with that model is no one acquires immoral levels of wealth, which means those that set policy don’t get as large of bribes.
  
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  - MystikIncarnate@lemmy.ca ⁨2⁩ ⁨months⁩ ago
    You’re not wrong, and I hate that about your comment.
    
    Take your upvote and go.
    
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- hexdream@lemmy.world ⁨2⁩ ⁨months⁩ ago
  What could possibly go wrong with your idea
  
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  - Allonzee@lemmy.world ⁨2⁩ ⁨months⁩ ago
    It got us to the moon.
    
    Then we decided to sell off our society for private property under the lie that we’d all benefit.
    
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  - dezmd@lemmy.world ⁨2⁩ ⁨months⁩ ago
    For-Profit Medical Corporations would miss out on some lowest effort, unethical, low margins for their extreme profiteering opportunities?
    
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ExtremeDullard@lemmy.sdf.org ⁨2⁩ ⁨months⁩ ago
I’m kind of in that boat. I mean not really, and it’s not life-changing like it is for the lady, but it’s the same sort of issue.

I have implants inside of me. They’re RFID and NFC transponders of various kind made by Dangerous Things. They’re not essential to my life in the sense that I could very well do without them, but they’re immensely useful and handy on a day-to-day basis.

One of them is a payment implant. The implant was made in 2020 and is not in fact allowed by Mastercard - meaning if the payment processor figures out it’s under my skin, they’ll strike it off the EMVCo network and I’ll lose the ability to make payments with my hand. It expires in 2029, and I already know after that date that there probably won’t be a replacement available. So I will lose that ability in 2029.

And you know what? It really does feel like a loss: this is my second payment implant because the first one failed a year in, and it really does feel like a loss. Similarly, I have other implants that I use all the time to open doors and authenticate with online services, and when those fail (and some of them did, I had to have them replaced), it does feel like losing a bodily function too.

I’m an amputee, so I know what it feels like to lose a bit of myself, and when one of my implant fails, it feels very similar. Not the same and not as terrible of course, but it’s the same kind of feeling: you feel less yourself and less able that you were.

The other question that arises is whether implants become part of your body, and whether anybody is legally allowed to take them away from you. In other words, nobody is legally allowed to remove your heart or your spleen without your consent, but are implants treated the same way?

Like for example, suppose I go to court and a judge reckons my cryptographic implant was used to encrypt evidence on my computer: can the judge order it removed from my body against my will to send it to a forensic lab? I mean after all, it’s now part of my body and providing me with a new bodily ability of sort: it could be argued that removing my implant can be construed as disabling me - which, as I said, really does feel a bit like that.

This has never come up in court, and I’m an honest, nice guy so I won’t be the one breaking that particular ground. But the question is intriguing.

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- SpaceNoodle@lemmy.world ⁨2⁩ ⁨months⁩ ago
  Liar. You’re not a dullard at all.
  
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- Aviandelight@mander.xyz ⁨2⁩ ⁨months⁩ ago
  This is a fascinating perspective, thanks for sharing your experience. It makes me really happy to hear first hand how this new technology does improve quality of life for people.
  
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- Crackhappy@lemmy.world ⁨2⁩ ⁨months⁩ ago
  Holy shit. What an amazing story you have. Have you written more in depth about your life and all these things?
  
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rob_t_firefly@lemmy.world ⁨2⁩ ⁨months⁩ ago
On the bright side, she no longer has Johnny Silverhand living in her head and complaining about all her decisions.

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- VindictiveJudge@lemmy.world ⁨2⁩ ⁨months⁩ ago
  The fun thing is that half the time Johnny complains, you gain approval with him anyway. He may bitch about you stopping to save random folks and talk about how it won’t actually change anything, but he still approves deep down. He also approves if you call him on his bullshit, which is a nice change from most RPGs requiring you to be absurdly supportive of your party’s awful decisions to top off that approval meter.
  
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- geneva_convenience@lemmy.ml ⁨2⁩ ⁨months⁩ ago
  WaKe Up SaMuRaI
  
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- gwen@lemmy.dbzer0.com ⁨2⁩ ⁨months⁩ ago
  wait do you guys not have that?? i dont have johnny but it’s just whatever fictional thing im currently obsessed with /genq
  
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Cexcells@lemmy.world ⁨2⁩ ⁨months⁩ ago
Forced? What are the logistics there, what if she runs, and forcefully refuses? Are they going to literally get ppl to hunt her down and drag her to the operation room?

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- SacrificedBeans@lemmy.world ⁨2⁩ ⁨months⁩ ago
  Even worse. They would sue the crap out of her.
  
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- technocrit@lemmy.dbzer0.com ⁨2⁩ ⁨months⁩ ago
  The implant explodes if she goes too far from their base.
  
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Grimy@lemmy.world ⁨2⁩ ⁨months⁩ ago
The article isn’t clear on if they didn’t have enough money to buy it or if the company refused for liability and safety reasons.

Regardless, we really need stringent laws about this. Anything needing surgery should irrevocably become yours, both hardware and software wise, and the company should be setting up trusts for maintenance in case of bankruptcy.

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paysrenttobirds@sh.itjust.works ⁨2⁩ ⁨months⁩ ago
We need orphan technology program like for orphan drugs. I can’t imagine it would be very costly to keep this one woman’s device running, but it does take someone somewhere being responsible for it.

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- ExtremeDullard@lemmy.sdf.org ⁨2⁩ ⁨months⁩ ago
  I expect it would in fact be hugely expensive to keep the woman’s implant going: anything medical is even more expensive that aeronautical stuff. And also, who bears responsibility when the company tanks and the woman has an issue with her implant?
  
  But here’s what I think: innovative startups that want to run tests of experimental implants (looking at you Elon) should be legally required to set money aside to support the test subjects’ implanted hardware until the end of their natural life or until the implant fails, whichever comes first, if the company tanks.
  
  The money should pay for a skeletal crew of the original engineers working for a government-owned company set up and dedicated solely to that support after the original company disappears, and it should pay for the test subjects’ medical expenses related to their implants.
  
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  - takeda@lemmy.world ⁨2⁩ ⁨months⁩ ago
    
    But here’s what I think: innovative startups that want to run tests of experimental implants (looking at you Elon) should be legally required to set money aside to support the test subjects’ implanted hardware until the end of their natural life or until the implant fails, whichever comes first, if the company tanks.
    
    I wouldn’t trust psychopaths like Elon to not try to make those shorter.
    
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yggstyle@lemmy.world ⁨2⁩ ⁨months⁩ ago
Anyone remember repo men? Getting a bit tired of fiction becoming reality…

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reallykindasorta@slrpnk.net ⁨2⁩ ⁨months⁩ ago
Kinda similarly, my brother was taking a drug (interferon) for treatment of a rare cancer that not many people need anymore (a better drug replaced the main use case the drug was developed for, which is different from my brother’s use case). The manufacturer discontinued the drug and noone makes it anymore so my brother and others who were relying on it simply lost access. I never knew this could happen.

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- Revan343@lemmy.ca ⁨2⁩ ⁨months⁩ ago
  If a drug manufacturer stops making a drug they still have the patent for, they should be required to give up the patent; then ideally, the government (‘a Crown Corporation’ where I’m from) should start producing it
  
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Snapz@lemmy.world ⁨2⁩ ⁨months⁩ ago
Repo man isn’t fiction.

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lordnikon@lemmy.world ⁨2⁩ ⁨months⁩ ago
That’s cruel like a flower’s for Algernon situation.

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lnxtx@feddit.nl ⁨2⁩ ⁨months⁩ ago
Justified bailout in this case, but who cares.

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