this post was submitted on 25 Aug 2024
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A Boring Dystopia

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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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[–] norimee@lemmy.world 126 points 3 months ago (3 children)

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@lemmy.world 50 points 3 months ago (2 children)

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.

[–] chicken@lemmy.dbzer0.com 21 points 3 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.

[–] ShepherdPie@midwest.social 0 points 3 months ago (1 children)

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.

[–] peopleproblems@lemmy.world 6 points 3 months ago* (last edited 3 months ago) (1 children)

You can revoke your informed consent agreement at any time, including after a study has concluded, though it doesn't usually do you much good after it's done. it specifically means that you no longer agree to understanding the risks and benefits.

[–] ShepherdPie@midwest.social 8 points 3 months ago (1 children)

I found a paper that someone wrote on the subject and it appears that the woman did consent to having it removed, though she ultimately did wish she could have kept it. From the OPs article, it sounds like she was forced to have the craniotomy against her will which isn't the case.

https://www.brainstimjrnl.com/article/S1935-861X(23)01910-1/fulltext

[–] peopleproblems@lemmy.world 3 points 3 months ago

That checks out. Thank you.

[–] uriel238@lemmy.blahaj.zone 10 points 3 months ago* (last edited 3 months ago) (1 children)

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 unenforceable 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.

[–] Cypher@lemmy.world 2 points 3 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.