- 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.
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.)