Tiny computer in woman’s brain changed her life. Then she was forced to get it removed

When Rita Leggett was 3 years old, she was diagnosed with severe chronic epilepsy.

She had unpredictable and violent seizures, making it impossible for her to lead what many would consider a normal life.

“She couldn’t go to the supermarket by herself, and she was barely going out of the house,” ethicist Frederic Gilbert, co-author of a case report on Leggett, told the MIT Technology Review. “It was devastating.”

Leggett tried everything to manage her condition, but after testing a wide range of treatments with varying efficacy, nothing seemed to be successful, according to a May 1 case report published in Brain Stimulation.

That was until Leggett was 49 years old, and a group of researchers recruited her for an experimental clinical trial in 2010, according to the MIT Technology Review.

The trial tested a brain implant from the company NeuroVista that helped detect and alert someone if they were about to have a seizure, according to the case report.

The study, later published in The Lancet in 2013, enrolled 15 patients from around Australia who regularly had between two and 12 seizures per month.

The researchers surgically implanted a brain-computer interface, or BCI, into the skull of each study participant. A tiny computer and a grid of electrodes read neural activities in the brain and scanned for a neurological pattern that suggested a seizure was about to occur, according to the case report.

Spectacular benefit

For Leggett, the implant changed her life.

“Most people had a reasonable benefit and some people had a spectacular benefit,” Lancet study author Mark Cook told Nature. “I don’t think anyone could have imagined that anyone could do so well from this device.”

Before the implant, Leggett had on average three seizures a month. Once the implant was in place, she was alerted when she was going to have a seizure. The alert gave her time to take a dose of clonazepam, a drug that treats seizures and panic disorders.

Over the course of the two-year trial, she didn’t have a single seizure.

“I felt like I could do anything … apart from obvious little things like jobs,” Leggett told researchers in the case report. “But I could drive, I could see people, I was more capable of making good decisions, not bad decisions.”

She grew to have an intense emotional attachment to the device. It gave her a sense of safety and security, she told researchers, and she believed she became one with the BCI.

“My device became as dependable as time itself. Your alarm clock that wakes you up in the morning to get you to work on time! Your appointments for that day!” she told researchers.

For two years, Leggett bathed in the newfound control she felt over her life.

Then, NeuroVista went bankrupt.

‘Would’ve done anything’

The company presented its findings to possible investors during the experimental trial, showing that seizures could be predicted and prevented, Cook told Nature. But, implanting a computer into the skull is an invasive procedure, and investors were uneasy.

Without funding, the company discontinued the trial, and because the experimental implant had only a three-year battery life, it meant it had to be removed.

“I wish I could’ve kept it, I would’ve done anything to keep it,” Leggett told researchers.

She tried to buy it, hoping that by purchasing the implant the company would let her keep it inside her head. She told researchers her husband was willing to take out a second mortgage on their house just to finance the purchase.

But the fight was lost, and Leggett was forced to get the implantremoved, according to the case report.

“I was the last person to have the device out,” she told researchers.

What followed was a mourning period. Leggett was thrust back into the life she was willing to get experimental surgery to escape.

She cried for her loss of independence and the self-doubt she now felt knowing she could have a seizure at any time.

“Living without my device was very hard at first. I always felt like there was something missing, I’d forgotten or left behind,” she told researchers. “How will [I] cope and live without my trustworthy dependable part of myself?”

She was right back where she started, and she began having seizures again.

Ethical questions

“Important ethical questions are raised in the case of this patient,” the case report authors wrote. “What are the possible moral rights and legal protections for allowing implanted BCI users to retain access to the therapeutic benefits available only through sustained and secure use of the device? Do companies or medical teams have a moral obligation to maintain any postoperative ‘new person’ emerging from a successful implantation of an AI brain device?”

The ethicists who examined Leggett’s case described “symbiosis,” or a relationship that is mutually beneficial to all interested parties.

For Leggett, the computer provided a medical service. For the computer, Leggett provided data that could be used to update, expand and improve the implant.

“In our case above, the concept of a postoperative de novo (symbiotic) person seems to be regarded as being less than a full legal person since the device company did not prioritize her preservation and dismissed the objections and resistance of (Leggett) to be explanted,” the authors wrote. “One relevant ethical question is whether this should have been the case.”

The authors introduced the concept of “neuro-rights,” an extension of patient and human rights that allows for the right to preserve “people’s personal identity and the continuity of their mental life from unconsented external alteration by third parties.”

Leggett felt like a new person, with a new personality, after she was implanted with the computer. When it was taken out, that person was gone.

The authors argued that by taking the implant out of her head, the company was violating the European Union’s Charter of Fundamental Rights, which states that “everyone has the right to respect for his or her physical and mental integrity,” according to the case report.

“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,” case report co-author Marcello Ienca told the MIT Technology Review.

Ienca said it was the same concept as removing someone’s organ without their consent, according to the MIT Technology Review.

Years later, now 62 years old per the review, Leggett is still coming to terms with her immense sense of loss.

“I mean I know it’s been a while, but I still know what it did and how it worked and in a way if you think about it you can feel it still. It’s like it’s there but it’s not there,” she told researchers.

“A loss, a feeling like I’d lost something precious and dear to me, that could never be replaced: It was a part of me.”

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