Experts urge safeguarding mental privacy amid strides in neurotech
Carmen Galluzzi, a psychologist from São Paulo, had just turned 48 when she began to feel more tired than usual. Blaming the discomfort on the stress of working, studying, and caring for her home, she continued to try to adjust her routine—until she began to lose muscle strength and noticed that her movements were becoming slower and more limited. Only then was she convinced that something more serious could be going on.
Over the next three years, Galluzzi saw several specialists and underwent numerous examinations before a neurologist reached a definitive diagnosis: “You have Parkinson’s,” he said.
“It was shocking, but from then on I was able to decide what course of action to take. The doctor explained to me that the disease was progressive and incurable, but added that the initial symptoms could be controlled with the right treatment,” she told Agência Brasil.
Through deep brain stimulation, psychologist Carmen Galluzzi has enjoyed a better quality of life – Carmen Galluzzi / Personal Archive
Shortly after receiving the diagnosis, Galluzzi retired on disability, quit her job, and began to dedicate herself to looking after her health. Even so, as a cure for Parkinson’s has not yet been found, some of the effects of the disease have intensified. This motivated the psychologist, at the age of 63—13 years after her diagnosis—to agree to face a complex surgery: deep brain stimulation, or DBS.
Indicated for the treatment of neuropsychiatric diseases, including epilepsy and treatment-resistant depression, DBS consists of implanting electrodes in the patient’s brain. Two subcutaneous wires connect the extremely thin electric current conductors to a microbattery inserted under the skin, at the level of the patient’s chest. Working like a pacemaker, the device emits electrical pulsations in specific areas of the brain, helping control nerve impulses and minimizing the tremors caused by Parkinson’s disease.
Performed in June 2023, the surgery lasted around ten hours. During the time the skull was open, the psychologist remained conscious, sedated only with local anesthesia, as surgeons need patients to react to their voice commands in order to identify the exact point where the electrodes should be installed.
“People think surgery is done when you’re unwell. That’s not the case. It’s done to optimize treatment and give us more quality of life. I was discharged the very next day,” said Galluzzi.
“Over time, I was able to reduce the medication I had to take to prevent the spasms. And with the help of physiotherapy and speech therapy sessions—which I’m still taking—I feel much better today,” she added.
Investment
First performed around 40 years ago, DBS is still considered a cutting-edge medical procedure. However, according to neurosurgeon Dr. Bruno Burjaili, who operated on Galluzzi, it is one of several procedures born of the continuous evolution of neuroscience.
“DBS is a great step forward, the result of the improvement and development of neurotechnological techniques and equipment, but in view of the astonishing recent development of neuroscience, and considering the prospects for what’s to come, we can already regard it as a consolidated—and in a way old—technique,” said Dr. Burjaili.
In the view of the United Nations Educational, Scientific, and Cultural Organization (Unesco), “we are on the threshold of a new technological revolution.” In a report released last year, the organization points out that global government investments in neuroscience-related research exceeded $6 billion from 2013 to 2023. The amount includes military spending—such as the $10 million that the US Department of Defense has promised to allocate to the creation of an institute dedicated to advancing unified research into artificial and natural intelligence. The purpose, the text goes on to read, is “to improve understanding of how the brain works and to continue with more capable and reliable AI projects.”
Private investment between 2010 and 2020 reached $33.2 billion. Among the companies interested in the commercial possibilities of the results of neuroscientific research are giants such as Google and Microsoft. A month ago, Neuralink, owned by billionaire Elon Musk, announced it had implanted the first electronic chip in a patient’s brain, with the aim of studying ways of rehabilitating the nervous system of people with spinal cord injuries or amyotrophic lateral sclerosis, giving them back their movements.
US startup Kernel has developed a helmet that should map brain activity and identify moods, pointing to clinical treatments. A year ago, Philips and Kookon launched a wireless headset that, with the aid of an app, could monitor users’ physiological indicators while they are asleep and provide a “restful and rejuvenating sleep,” recommending suitable music or sounds and adjusting the volume to each stage of sleep.
In addition to the growing amount of money, innovations such as improved artificial intelligence are boosting the development and use of neurotech innovations whose impact has transcended the field of health, spreading to areas such as education, security, law, and advertising. One example is the research into the so-called brain-machine interface (BMI), which seeks to identify neural signals and transmit them in the form of algorithms to a computer capable of “interpreting” the thoughts of the person connected to it, transforming them into actions.
Mysteries
To unravel the workings of the mind, to recover movement once lost, to tackle neurodegenerative disorders, to connect brain and machine—some of the staggering promises of neuroscience may sound like science fiction, but evidence is mounting that many of them may not be far off from becoming a reality.
In 2014, millions of people around the world witnessed a paraplegic person kick a ball during the opening ceremony of the World Cup at São Paulo’s Itaquerão stadium. The symbolic gesture of Juliano Pinto, who lost his movements as a result of a car accident, was made possible thanks to the exoskeleton developed by a team of scientists led by Brazilian neuroscientist Miguel Nicolelis, a professor at Duke University in the US.
The rapid demonstration of the thought-controlled robotic garment, developed with the collaboration of 156 scientists of different nationalities, took place just 14 months after then US President Barack Obama announced a public–private investment of $100 million in what he called “the next great American project,” the BRAIN Initiative.
The acronym—which stands for Brain Research Through Advancing Innovative Neurotechnologies—casts light on the goal pursued by the US government: to support the creation of innovations that help scientists obtain dynamic images of the 86 billion neurons in action.
“As humans, we can identify galaxies light years away, we can study particles smaller than an atom. But we still haven’t unlocked the mystery of the three pounds of matter that sits between our ears,” onetime President Obama remarked. “The BRAIN Initiative will change that by giving scientists the tools they need to get a dynamic picture of the brain in action and better understand how we think and how we learn and how we remember. And that knowledge could be—will be—transformative,” he said as he unveiled the project.
The BRAIN Initiative has not yet been concluded, but it has inspired other countries, like Spain. At the end of 2022, the Spanish government announced it intends to invest at least €200 million by 2037 in the construction of the National Neurotechnology Center, or Spain Neurotech, in Madrid, to attract researchers and promote innovative endeavors in neurotechnology.
“A lot of money is being invested in the development of neurotechnology all over the world,” Spanish neurobiologist Rafael Yuste told Agência Brasil. Director of the Center for Neurotechnology at Columbia University and one of the creators of the BRAIN Initiative, Yuste has been invited to direct the future Spanish center. A developer of innovative optical methods for observing neural circuits in action, he argues that humanity is close to finally understanding how the brain works. This would represent a huge leap forward, he noted, not only for the treatment of neurological diseases, but also for a better understanding of the human being.
“The brain is the organ from which the mind originates. With technologies that allow us to ‘enter’ the brain and record its activity, we’ll be able to understand how our mind works. As a result, we’ll be able sooner or later to decipher mental activity and, in some cases, alter it,” said Yuste.
The Spanish scientist also believes that some people will soon be using portable neurotechnological devices capable of remotely controlling other gadgets, accessing the internet without the need for computers, tablets, or cell phones. “It won’t be long before we can use neurotechnology to do everything we do today using our smartphones. It’ll be a revolution, with opportunities and challenges.”
Regulation
Rafael Yuste, who has been named one of the five most influential scientists in the world by Nature magazine, is not alone in pointing out that the development and expected popularization of neurotechnology will bring with it new ethical and social problems. With the common concern that his discoveries and inventions will be misused, the Spanish scientist has created, along with 24 other experts, the Neurorights Foundation.
The five proposed neurorights aim to protect the mental privacy, personal identity, and free will of users, as well as guaranteeing equal access for societies to the benefits of neurotechnology and preventing developers from reproducing prejudices and biases in the creation of new technology, respecting diversity, responsibility, and transparency when designing equipment.
“There are five areas in which the use of neurotechnology without some kind of regulation or protection raises ethical and social concerns,” he told Agência Brasil, explaining that the suggestion is for each country to pass its own laws and for the United Nations to update the Universal Declaration of Human Rights, expanding the list of fundamental rights.
Unesco also advocates the urgent need for countries “to agree on suitable neurotech governance tools and policies, to make sure neurotech is developed and deployed for the good of individuals, all individuals, and societies worldwide.” In the document, the organization warns that “the promise to improve the life of those living with disabilities triggered by brain-related problems that neurotechnology makes may come at a high cost in terms of human rights and fundamental freedoms, if abused,” which is why “well-crafted, effective policies need to rely on hard evidence, and on a clear definition and description of the problem at hand, so that the choices made do not risk being distortive.”
A pioneering spirit
In October 2021, Chile became the first country to include the protection of brain activity and data in its constitution. Passed unanimously, Law 21.383 establishes that scientific and technological development must be at the service of people, respecting life as well as physical and psychological integrity. The law also outlines the future regulation of conditions and restrictions surrounding the use of neurotechnology on human beings.
In the view of São Paulo state prosecutor Camila Pintarelli, fundamental rights need to be reread in the light of new technological innovations – Joel Vargas
A proposal to regulate neurorights has supporters in Brazil already. Since last year, the Brazilian Senate has been working on Constitution Amendment Bill 29, which, if approved, will result in the inclusion of the protection of mental integrity and algorithmic transparency among constitutional rights and guarantees. In the lower house, a bill authored by federal representative Carlos Henrique Gaguim on the subject is being considered. Bill 1229 of 2021 aims to amend the General Personal Data Protection Act, including protection for neural data “obtained from any electronic, optical, or magnetic system.”
“Fundamental rights need to be re-read in the light of new technologies and it’s high time Brazil incorporated the protection of mental activity into our constitution,” argues São Paulo state prosecutor Camila Pintarelli, one of the figures behind the constitutional amendment, which had the support of both government and opposition parliamentarians.
“It’s an abstract, complex topic, but a topic we need to start paying attention to, because the speed of technology is much faster than the speed of regulation,” she argued.
“Many who hear about the need to protect the human mind and neurorights believe we’re talking about science fiction, but the interaction between machines and brains is already real, and it’s getting closer and closer to us, be it for therapeutic purposes—offering the possibility of a cure for hitherto incurable mental illnesses—or for various commercial purposes—which is where they cause the most concern,” Pintarelli went on to state.
Manipulation
A professor at the Federal University of Minas Gerais (UFMG), where he supervises postgraduate students in law and neuroscience, Renato César Cardoso argues that Congress should first and foremost promote a broad debate among representatives from different social segments.
Professor Renato César Cardoso says it is necessary to legally differentiate the commercial use of neurotechnology from their use in scientific research – Renato César Cardoso / Personal Archive
“Law comes in the wake of social changes, which in turn arise and impose on us the need to get ahead of the game, at the risk of being run over by reality. It’s crystal clear that, if nothing is done, we will soon have problems with issues like mental privacy. So some of its aspects do need to be regulated. But this regulation must be the result of a debate involving the whole of society. It’s not just up to neuroscientists, politicians, or lawyers to say what should be done,” Professor Cardoso remarked.
He drew attention to what he termed “legal and conceptual problems” in the Neurorights Foundation’s proposals for regulation, currently being considered in Congress. “The two proposals have their worth in fostering debate, but some of their points are confusing and imprecise, perhaps because they have a strong neuroscientific bias and in some respects end up falling short on the legal side. Saying, for instance, that we’re going to protect identity and free will… What’s identity? What exactly should be protected? These are two really broad concepts that are difficult to define—be it in law, philosophy, or even neuroscience. It’d be better to talk about protecting people from possible cognitive manipulation, guaranteeing the cognitive freedom of neurotechnology users,” he stated.
In Professor Cardoso’s view, another “problematic” albeit relevant issue is equitable access to sensory enhancement neurotechnology. “Of course we need to prevent a privileged caste from having exclusive access to advances that may not benefit most people who will be excluded, but this requires other measures, like public policies to reduce inequalities, and that’s not limited to national legislation either,” he said, defending the importance of legally differentiating the commercial use of neurotechnology from their use for scientific research.
“If it’s not perfectly clear what’s required and what should be protected, the proposal might render a great deal of academic research unfeasible. The distinction between neural data obtained for research and for commercial use must be in the law,” he concluded.
