- cross-posted to:
- science@beehaw.org
- cross-posted to:
- science@beehaw.org
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.
All of their code and specs should be required to be put into escrow in case they go out of business.
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.
Doing stuff that makes peoples lives better with no short-term financial incentive? Sounds like a mission for public-funded institutions :)
There’s no real guarantee it’ll make her life better especially if it’s a 1 of 1 implant. They could just as easily try to control it and give her debilitating seizures because they have nothing to test on. I get the sentiment but I don’t think anybody would be willing to take on that risk.
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.
The same rule applies to whenever they sell the IP to. Whoever buys the IP should be legally obligated to continue the experiment as a condition of buying it. The alternative—putting the IP in the public domain—doesn’t do a lot for people who need active, ongoing support for a medical device, implanted in their body. I’d make a separate, stricter rule for that case. I don’t have a clear idea what that rule should be, though, because we can’t require a medical experiment to continue indefinitely if we want anyone to develop new medical devices.
If you start adding on mandates to the IP like that, that severely narrows the list of companies that are even capable of buying it. They have to have employees with knowledge of the specific device, which only a small number of people may be using.
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.
I also think this was probably what happened, although the article isn’t clear.
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 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.
This is exactly the point; when this was a clear possibility that there would be no other option for her, they shouldn’t have been able to put the device in a person in the first place.
But there’s always going to be the possibility of that. No company can guarantee that it won’t go bankrupt for at least several decades.
(Plus, it sounds like this woman is better off having the implant and then losing it than she would have been if she never had it.)
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.
The BEST timeline.
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.