Australian Medical Trial Highlights Need for Human Rights Legal Evaluation
The neuro-rights of individuals is a subject most people haven’t considered. The issue is broken down in a new article on MIT’s technologyreview.com.
The neuro-rights of people who receive brain implants for various medical ailments is the subject explored by author Jessica Hamzalou. She interviewed two people with separate medical issues that were being solved with an implant. Then one day these people were asked to submit to the removal of these implants that had worked quite well for them. The problem wasn’t the implant or the patient, it was the companies who owned them. They failed.
Among the companies that are still doing implants, they include Blackrock Neurotech and Precision Neuroscience, which are making significant investments in brain implant technologies.
Neuro vs. Human Rights
The first subject of the brain implant had been suffering from a devastating form of epilepsy. The woman, Rita Legget, submitted to the clinical trial back in 2010.
According to the report, Leggett was recruited for the clinical trial when she was 49 years old. A research team in Australia was testing the effectiveness of a device designed to warn people with epilepsy of upcoming seizures. Trial volunteers had four electrodes implanted to monitor their brain activity. Recordings were sent to a device that trained an algorithm to recognize patterns preceding an attack.
A handheld device would signal how likely a seizure was to occur in the coming minutes or hours—a red light indicated an imminent episode. In contrast, a blue light meant a seizure was very unlikely, for example. Leggett signed up and had the device implanted in 2010.
The meat of the article is the company that invented the device folded and recommended that Legget remove the device ASAP. Legget found the device very effective and she felt normal for the first time in her life. But it was not possible for her to keep it. She and he husband tried desperately to buy the device. But it was denied to them.
“Being forced to endure removal of the [device] … robbed her of the new person she had become with the technology,” Ienca and his colleagues wrote. “The company was responsible for the creation of a new person … as soon as the device was explanted, that person was terminated.”
The removal of this implant, and others like it, might represent a breach of human rights, ethicists say in a paper published earlier this month. The issue will only become more pressing as the brain implant market grows in the coming years and more people receive devices like Leggett’s.
“There might be some forms of human rights violations that we haven’t understood yet,” says ethicist Marcello Ienca at the Technical University of Munich, a coauthor of the paper.
Spinal Injury Miracle
It felt like a miracle for Ian Burkhart. He received an implant due to a severed spinal cord. The device allowed him to move his hands and other body parts that he was told would never work again. He knew it was a trial from the beginning and there would come a time the device was removed. However, Burkhart wanted to keep the device just like Legget did in the story above.
Burkhart’s case is different from Legget’s. He was only able to use his device in a lab setting, which he said helped him compartmentalize its benefits. And while the team that implanted his device also struggled with funding, it was an infection that eventually led to its removal.
But his implant changed his life, and losing it was challenging, he says:
“It can be a big emotional and psychological and physical effort to have those devices removed.”
Therein lies the problem and the crux of a well-written story about a new medical right that AI is giving to humans. And the humans who are attempting to take that new right away.
This is the question facing the ethicists and legal scholars investigating the importance of “neuro rights”—the subset of human rights concerned with the protection of the human brain and mind.
Some are currently exploring whether neuro rights could be recognized within established human rights, or whether we need new laws.
read more at technologyreview.com
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