A brain implant changed her life. Then it was removed against her will
Now here’s a hell of an bioethics conundrum.
Leggett received her device during a clinical trial for a brain implant designed to help people with epilepsy. She was diagnosed with severe chronic epilepsy when she was just three years old and routinely had violent seizures. The unpredictable nature of the episodes meant that she struggled to live a normal life, says Frederic Gilbert, a coauthor of the paper and an ethicist at the University of Tasmania, who regularly interviews her. “She couldn’t go to the supermarket by herself, and she was barely going out of the house,” he says. “It was devastating.” [….] While trial participants enjoyed varying degrees of success, the [experimental brain implant] worked brilliantly for Leggett. For the first time in her life, she had agency over her seizures—and her life. With the advance warning from the device, she could take medication that prevented the seizures from occurring. “I felt like I could do anything,” she told Gilbert in interviews undertaken in the years since. “I could drive, I could see people, I was more capable of making good decisions.” […] She also felt that she became a new person as the device merged with her. “We had been surgically introduced and bonded instantly,” she said. “With the help of science and technicians, we became one.” Gilbert and Ienca describe the relationship as a symbiotic one, in which two entities benefit from each other. In this case, the woman benefited from the algorithm that helped predict her seizures. The algorithm, in turn, used recordings of the woman’s brain activity to become more accurate. […] But it wasn’t to last. In 2013, NeuroVista, the company that made the device, essentially ran out of money. The trial participants were advised to have their implants removed. (The company itself no longer exists.) Leggett was devastated. She tried to keep the implant. “[Leggett and her husband] tried to negotiate with the company,” says Gilbert. “They were asking to remortgage their house—she wanted to buy it.” In the end, she was the last person in the trial to have the implant removed, very much against her will. “I wish I could’ve kept it,” Leggett told Gilbert. “I would have done anything to keep it.” Years later, she still cries when she talks about the removal of the device, says Gilbert. “It’s a form of trauma,” he says. “I have never again felt as safe and secure … nor am I the happy, outgoing, confident woman I was,” she told Gilbert in an interview after the device had been removed. “I still get emotional thinking and talking about my device … I’m missing and it’s missing.” Leggett has also described a deep sense of grief. “They took away that part of me that I could rely on,” she said. If a device can become part of a person, then its removal “represents a form of modification of the self,” says Ienca. “This is, to our knowledge, the first evidence of this phenomenon.”
(tags: bioethics brain science capitalism ethics medicine epilepsy implants body-modification self-modification)