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Doctors Remove Woman’s Brain Implant Against Her Will

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.

lnxtx ,
@lnxtx@feddit.nl avatar

Justified bailout in this case, but who cares.

reallykindasorta ,

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.

norimee ,

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.

peopleproblems ,

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.

ShepherdPie ,

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.

lordnikon ,

That’s cruel like a flower’s for Algernon situation.

Snapz ,

Repo man isn’t fiction.

ExtremeDullard , (edited )
@ExtremeDullard@lemmy.sdf.org avatar

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 that’s what it felt like. 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 bits 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 than you used to be.

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 sorts: 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.

SpaceNoodle ,

Liar. You’re not a dullard at all.

Aviandelight ,
@Aviandelight@mander.xyz avatar

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.

Crackhappy ,
@Crackhappy@lemmy.world avatar

Holy shit. What an amazing story you have. Have you written more in depth about your life and all these things?

Grimy ,

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.

bizarroland ,

For instance if your hip implant manufacturer went out of business you wouldn't expect them to come take your hip.

What should have happened it would have been regulatory capture where when they went out of business the government should have stepped in and taken their source code and made it public domain.

I'm sure some enterprising people would have been glad to host whatever servers were needed to keep this woman's seizures from working and her brain implant operational.

AFKBRBChocolate ,

I think the difference is likely that this is a trial. The woman likely didn’t pay for it, and they didn’t want her to because they don’t want anyone owning their tech while it’s being developed.

bizarroland ,

I mean yes but you also have to consider the face of it.

This whole thing is basically them saying sorry, we didn't make 800 million dollars so we're going to cut your head open and throw away what we find in there.

grue ,

I don’t give a shit what the company wants or think it’s entitled to; the device was implanted inside a human body. That means the human it’s implanted in owns it, and fuck any psychopath who claims it could ever be otherwise!

downpunxx ,

well, knowing, going in, you are signing documents which clearly state that in the event of the bio mod company going out of business, all further support for the mod would end, and the implant would be forced to be removed, then one takes their chances when one decides to try bio mods.

logic would lend itself to governments creating law which says bio mod companies must put aside enough monies to fund ongoing support for the bio mods, for the length of the modded persons natural life.

what that means, and how much money that entails, would be massive, and most likely alter the entire bio mod industry, but seems the only ethical way to proceed.

Silverseren ,

So the government can force you to go into surgery to remove something from your brain now?

Kyrgizion ,

Always could.

hannesh93 ,
@hannesh93@feddit.org avatar

How though? The government literally couldn’t force people into getting a vaccine because that was too damaging for bodily autonomy. How is brain surgery in any way less invasive?

takeda ,

It’s not the government though. It looks like the company.

This was a trial and the implant likely required to communicate with their servers and without them it wasn’t able to work.

The real issue is that probably anything that’s installed in humans needs to have schematics and software made public domain when company goes out of business so someone else could maintain it to avoid these issues.

paysrenttobirds ,

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.

ExtremeDullard ,
@ExtremeDullard@lemmy.sdf.org avatar

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.

takeda ,

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.

yggstyle ,

Anyone remember repo men? Getting a bit tired of fiction becoming reality…

TheWeirdestCunt ,

Oh great so even physical ownership doesn’t even mean you own something anymore

yggstyle ,

The BEST timeline.

dono ,

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.

lolcatnip ,

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.

brianary ,

All of their code and specs should be required to be put into escrow in case they go out of business.

ShepherdPie ,

That doesn’t seem like the best idea with expiramental implants. I doubt anyone would want to take on the liability for some defunct company’s implant because there’s no upside for them to do so and a lot of downsides.

Rhaedas ,

Liability could be easily signed away by the patient if she felt that leaving it was a better option. And she/the family can't sue if the removal makes things worse now, because the company won't exist. Seems leaving it in was a better risk.

xantoxis ,

I can’t believe they did a surgery on her without already giving her this option. This is basic bodily autonomy human rights stuff, doctors are not going to do any surgery on a human being because a third party asked them to, and the patient didn’t consent. It’s not something that happens outside of Nazi Germany, with exceptions only in the case where a person’s advance directives are activated; or they are completely incapacitated with no AD.

I suspect they told her the risk of the device killing her or making her life worse was either extremely high, or impossible to judge, and she made the decision on her own to get rid of it. To be clear this is a travesty, and the people running the responsible company should face severe consequences, but I think we’re going off the deep end if anyone believes she was not given an option in this matter. Doctors will straight up leave stuff in you that will kill you if they can’t obtain your consent to fix it.

ArbitraryValue ,

I suspect they told her the risk of the device killing her or making her life worse was either extremely high, or impossible to judge, and she made the decision on her own to get rid of it.

I also think this was probably what happened, although the article isn’t clear.

To be clear this is a travesty, and the people running the responsible company should face severe consequences

Why do you think so? There’s nothing special about making brain implants which protects a company from going bankrupt. The bankrupt company can neither continue to service the implant nor legally give her the ability to do service it herself even if they wanted to.

The FDA won’t let a company that makes medical devices provide anything to patients without proving that it’s safe first. There’s no exception for patients willing to take that risk except in the context of clinical trials that are regulated very strictly. Letting this woman service her own brain implant isn’t just missing official proof of safety; it almost certainly isn’t actually safe.

athairmor ,

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.

Eatspancakes84 ,

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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