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recent bookmarks from jmA brain implant changed her life. Then it was removed against her will2024-01-24T19:49:42+00:00
https://www.technologyreview.com/2023/05/25/1073634/brain-implant-removed-against-her-will/
jmLeggett 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.”
]]>bioethics brain science capitalism ethics medicine epilepsy implants body-modification self-modificationhttps://pinboard.in/https://pinboard.in/u:jm/b:659738b001c0/A Controversial Virus Study Shows Flaws in How Science Is Done - The Atlantic2018-10-10T11:21:25+00:00
https://www.theatlantic.com/science/archive/2018/10/horsepox-smallpox-virus-science-ethics-debate/572200/
jmAbsent clearer guidelines, the burden falls on the scientific enterprise to self-regulate—and it isn’t set up to do that well. Academia is intensely competitive, and “the drivers are about getting grants and publications, and not necessarily about being responsible citizens,” says Filippa Lentzos from King’s College London, who studies biological threats. This means that scientists often keep their work to themselves for fear of getting scooped by their peers. Their plans only become widely known once they’ve already been enacted, and the results are ready to be presented or published. This lack of transparency creates an environment where people can almost unilaterally make decisions that could affect the entire world.
Take the horsepox study [the main topic of this article]. Evans was a member of a World Health Organization committee that oversees smallpox research, but he only told his colleagues about the experiment after it was completed. He sought approval from biosafety officers at his university, and had discussions with Canadian federal agencies, but it’s unclear if they had enough ethical expertise to fully appreciate the significance of the experiment. “It’s hard not to feel like he opted for agencies that would follow the letter of the law without necessarily understanding what they were approving,” says Kelly Hills, a bioethicist at Rogue Bioethics.
She also sees a sense of impulsive recklessness in the interviews that Evans gave earlier this year. Science reported that he did the experiment “in part to end the debate about whether recreating a poxvirus was feasible.” And he told NPR that “someone had to bite the bullet and do this.” To Hills, that sounds like I did it because I could do it. “We don’t accept those arguments from anyone above age 6,” she says.
]]>the-atlantic science news smallpox horsepox diseases danger risk academia papers publish-or-perish bioethics ethics biology geneticshttps://pinboard.in/https://pinboard.in/u:jm/b:7848b9738f56/