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.
Leggett was, as a recent paper in the journal Brain Stimulation about her situation explains, 49 when she was recruited for the trial, though she'd suffered from epilepsy since she was just three years old. While other participants reported varying degrees of success with the implant, her own results were above and beyond.
Before implantation, Leggett had trouble doing everyday activities out of fear of seizures. But after it, she felt she could, as she told researchers, "do anything," and was able to participate in a lot of the regular stuff many of us take for granted, such as driving a car and seeing friends.
Leggett, who declined to be interviewed by the Tech Review after a recent stroke, also developed a symbiotic relationship with the implant, and told the researchers behind the Brain Stimulation paper that she and the BCI "became one."
All of that changed, however, just a few short years later when Neuravista ran out of money and trial subjects like Leggett were told to get their implants removed.
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.
"I wish I could’ve kept it," Leggett told Gilbert, who regularly interviews her. "I would have done anything to keep it."
"I have never again felt as safe and secure... nor am I the happy, outgoing, confident woman I was,” she continued. "I still get emotional thinking and talking about my device... I’m missing and it’s missing."
Her experience, the researcher said, was a form of "trauma," and she isn't alone — with more and more experiments like Neuravista's cropping up, so too does the sense of loss experienced at the trials' ends by participants who have particularly good outcomes.
In fact, it calls to mind a similar incident last year in which the manufacturer of a bionic eye decided the units were obsolete, leading patients who'd had them implanted to lose their vision again.
It sounds like dystopian fiction that biotech companies could play takesie-backsies with patients' implants, in other words, but the reality is we've already crossed into that world. And if devices such as Leggett's BCI can, as she suggested to researchers over the years, become part of a person, then their removal "represents a form of modification of the self," Ienca said, and he and his coauthors are arguing that there need to be updated patients' rights when it comes to these sorts of outcomes.
"If there is evidence that a brain-computer interface could become part of the self of the human being, then it seems that under no condition besides medical necessity should it be allowed for that BCI to be explanted without the consent of the human user," he said, adding that removing it could be akin to the forcible removal of organs, which is — for obvious reasons — profoundly illegal.
More on brain implants: Brain-Computer Interfaces Will Usher In the Singularity
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