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.
Oh great so even physical ownership doesn’t even mean you own something anymore
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.
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.
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.
As part of unwinding a company that is going out of business, they usually do sell off their IP. That doesn’t mean that anyone will continue this particular experiment.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
You can. They can do the surgery or they can be sued, it’s a binary choice.
Morals are a different story but legally no, it’s quite clear and arbitration agreements are pretty literally sections of contracts that say you can’t argue certain things in certain ways.
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.
It was compulsory brain surgery for a repo. … This is the sort of inciting incident that triggers cyberpunk dystopian adventures
That was my first thought as well. Glad to see it posted, because it’s sort of a niche cult classic.
Fingers crossed this woman doesn’t end up with a Zydrate addiction. It comes in a little glass vial, you know.
I feel like maybe research on medical implants like this should be done by the state.
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.
And as a species, our actions have spoken on no uncertain terms, we’d literally rather destroy our only habitat and ourselves then let go of the dream of living like modern Pharoahs on the backs of others.
It got us to the moon.
Then we decided to sell off our society for private profit under the lie that we’d all benefit.
Biggest reason this country has gotten this cartoonishly shitty, why our commons like bridges are literally collapsing.
Public research was slower and more considered, as it didn’t have the very unscientific sole goal of “how do we monetize this half-baked discovery NOW?!” with no other consideration let alone to societal consequences, but publically funded research yielded social benefits we all reaped through the commons. Reckless growth/metastasis for private profit is giving us technologies that make us miserable and that only truly benefit private shareholders at our expense. Plus you know, the whole reverse terraforming our only world against us, again for short term private profit.
OK, good point. Research yes. Somebody still needs to control and manage the things. That concerns me. I’m not imagining a medical /brain implant version of nasa. My problem is when politicians start imposing politics to the situation. I don’t want the governments or private companies dicking around in my brain imposing fad or outrage of the day changes. Standards good, control, not so good.
