Suppose you were completely paralyzed and unable to communicate apart from the ability to move your eyes. Would you blink a few times to indicate your agreement to undergo a experimental brain implant surgery that few monkeys have survived and could leave you in excruciating pain for the rest of your life? The payoff for being willing to risk all in undergoing such an operation is that if it goes well, you would be able to communicate your brain thoughts to a computer interface, a technology known as BCI (Brain-Computer Interface).
A patient who has ALS doesn’t have long to think about whether a brain implant is a suitable procedure for them or not. Typically, people suffering from the condition have an average life expectancy of two to five years of diagnosis. Some people do beat the prognosis odds of two to five years. The medical condition was made famous by the famous British physicist Stephen Hawking who lived 55 years after his diagnosis and relied on controlling his communication technology using a cheek muscle.
Eventually, people who have ALS may even lose muscle control of their eyes. The offer of an operation that gives them access to BCI technology that can read their thoughts may become the only way they can communicate.
In 2018 the Wyss Center for Bio and Neuroengineering in Geneva gained consent from an ALS patient who used eye movement. The patient agreed that the Wyss Center for Bio and Neuroengineering could put a brain implant into his brain to communicate with human brain-computer interface technology.
According to the Independent, the Wyss Center obtained consent from an ALS patient to put a chip in his brain while ‘he still could use eye movement to communicate in 2018.’
It is still a very interesting issue whether an organization can clearly demonstrate that a patient with ALS can give informed consent by simply using eye movement. Informed consent requires (1) that the patient understands the nature of the procedure, (2) that the patient understands the risks and benefits of the procedure, (3) that the patient is aware of any reasonable alternatives, (4) the patient understands the risks and benefits of alternatives, and (5) that the physician has made a thorough assessment of the patient’s understanding of elements 1 through 4.
ALS stands for Amyotrophic Lateral Sclerosis; people may also refer to ALS as a locked-in syndrome. When a person has this condition, their health degenerates to a locked-in state. The National Institutes of Health website advises ‘Locked-in syndrome is a rare neurological disorder characterized by complete paralysis of voluntary muscles, except for those that control the eyes. People with locked-in syndrome are conscious and can think and reason but cannot speak or move. Vertical eye movements and blinking can be used to communicate.’
This is an exceptionally brave procedure for someone to consent to; consent for such a procedure is crucial. Neuralink, another company that pioneers research in human brain-computer interface technology, has used monkeys during early testing phases of brain-computer interface technology. It hasn’t turned out well for the monkeys. Repulicworld.com writes, ‘Neuralink was accused of animal cruelty after multiple media reports suggested that 15 out of 23 monkeys used for experiments died after “extreme suffering”‘ due to complications from a brain implant.
In 2019 two square electrode arrays were surgically implanted by the Wyss Center into the patient’s brain to facilitate communication with a brain-computer interface (BCI).
News about brain implants in humans had gathered momentum recently in January press releases when Elon Musk’s company Neurolink announced that it hoped to put computer chip implants into people’s brains in 2022. However, the technology for doing brain implants has been around for a while. It has been used successfully by Synchron, a rival company of Neurolink, in 2020, helping paralyzed patients “control their devices to text and type through direct thought.”
The Wyss Center for Bio and Neuroengineering was founded in 2013, three years before Neuralink and Synchron were founded. The Wyss Center for Bio and Neuroengineering was founded by ‘neuroscientist Professor John P. Donoghue, best known for his work on human brain-computer interfaces, brain function, and plasticity.’ The Wyss Center may not be as publicly well known as the much-mentioned Musk company Neuralink or rival Synchron. Still, its founder John Donoghue was pioneering human brain-computer interface research long before the topic of brain implants was featured in the popular press.
What is unique about this brain interface research carried out at the Wyss Center is that their study is helping an ALS patient use brain interface technology. When someone is in an advanced state of ALS, unlike other paralyzed patients, a person with ALS cannot verbally communicate and give feedback on whether the technology is doing its job and working for them or even if the experimentative procedures performed on them are causing them excruciating pain.
Before this research, a brain implant had never been tested on a completely locked-in patient, ‘and it was unknown whether the communication was even possible for people who had lost all voluntary muscular control.’
The challenges of this patient’s condition meant that a lot of configuration was needed to make the brain interface technology correct.
According to the Independent, ‘It took three months of unsuccessful attempts before a configuration was achieved that allowed the patient to use brain signals to produce a binary response to a speller program, answering ‘yes’ or ‘no’ when presented with letters….It took another three weeks to produce the first sentences, and over the next year, the patient produced dozens of sentences.’
Nearly four years after this ALS patient gave the consent for experimentative procedures to be performed on his brain, the Wyss Center tweets about their success on the 24th of March 2022
‘Completely locked-in man uses a brain-computer interface to communicate. Today, Wyss Center COO, Olivier Coquoz, discussed the team’s new Nature Communications paper on @RTScqfd. Listen back to the interview here: https://pages.rts.ch/la-1ere/programmes/cqfd/24-03-2022#12927261 #neuroscience #BCI’
During the interview, Dr Jonas Zimmermann, a senior neuroscientist at the Wyss Center, stated, “Ours is the first study to achieve communication by someone who has no remaining voluntary movement and hence for whom the BCI (Brain-Computer Interface) is now the sole means of communication,”
Technology that can read your thoughts
What profound messages might someone who has not been able to speak for over four years, using the power of thought, want to communicate to a computer interface?
Through the power of thought, the patient was able to use the brain implant to ask his caregivers for a beer, and they played him his favorite band, ‘Tool.’ The patient also wanted to order a curry and get a head massage from his mother. The man ‘was also able to interact with his 4-year-old son and wife, generating the message: “I love my cool son.”’
The scientists behind this research are hoping that they will be able to raise a further $500,000+ towards their study of providing similar implants for other people with ALS.