Bill outlines protection for mental privacy in the age of neurotech
A proposed amendment to the Constitution presented by senators from different parties seeks to protect the integrity and privacy of the mental data of users of neurotechnology—methods or devices used to record or modify brain activity.
Filed in June 2023, PEC 29, as it is known, is inspired by a proposal from the Neurorights Foundation, in the US, whose main spokesperson is Spanish neurobiologist Rafael Yuste and by a proposal already approved by the Chilean Congress. The country is the first to include the protection of brain activity and data in its constitution.
Among the arguments put forward in the piece of legislation, lawmakers point out that the development of neurotechnology brings “hope and great expectation,” especially in medicine, but also creates “a well-founded concern about the ethical and normative limits” of the use of these methods on human beings.
Almost nine months after its submission, PEC 29 is still awaiting the appointment of a rapporteur by the chair of the Constitution and Justice Committee, Senator Davi Alcolumbre. The rapporteur is the figure tasked with presenting an opinion to the other members of the body responsible for evaluating the constitutionality of the proposals being considered in the Senate.
The initiative stands out not only because of the number of signatories—27 senators—but also because it unites representatives of multiple ideological currents.
The text’s authors argue that the regulation of neurorights is essential to protect privacy, autonomy, and individual freedom in an increasingly digitized world. The bill also seeks to ensure that the benefits of neuroscientific technology are distributed fairly and equitably across society.
The parliamentary defense of the regulation of neurorights in Brazil echoes the international proposal drafted by experts in neuroscience, law, and bioethics who preach the need for countries to incorporate the protection of neurodata into their laws and the possibility of the United Nations expanding the list of fundamental rights established in the Universal Declaration of Human Rights in order to protect people and societies from the potentially harmful effects of the use of neurotechnology.
São Paulo state prosecutor Camila Pintarelli advocates the need for a debate on users' essential rights amid strides in neurotechnology – Personal Archive
São Paulo state prosecutor Camila Pintarelli was involved in the drafting of PEC 29. Like Spain’s Rafael Yuste, she believes the prospects for what is to come in neuroscience resemble a “new renaissance.”
“I’ve been studying and reading about the evolution of neurotechnology and its possible impacts for at least five years. I’ve noticed that not only has interest in the subject on the rise, but also the brain—brain activity—has taken on a legal value it didn’t have until quite recently,” she noted, adding that even though they sound “abstract and complex,” neurotechnology is increasingly present in everyday life, which requires a debate on the essential rights of users.
“We need to start paying attention to this. The speed at which technology makes strides is far higher than the speed at which [legislators] regulate. Times change, and fundamental rights need to be frequently reread in the light of new technology,” she argued.
“Considering the recent advances and prospects for neuroscience, I think it’s high time we incorporated the protection of the human mind and neurodata into our constitution, as Chile did with the approval of Law 21.383 in 2021,” she went on to say, noting that groups advocating the regulation of neurorights already exist in several countries.
“In Mexico, they have a proposal to reform the constitution to include the protection of neurorights. We are seeing similar movements in Uruguay, Colombia, Peru, and other countries,” Pintarelli said.
“First and foremost, we need to distinguish between two strands. There’s neurotechnology used in health care, in the treatment of diseases, which is the promise of a cure for diseases that remain incurable to this day; and there’s the use of neurotechnology for other, more commercial purposes. That’s what worries us, when neurotechnology—access to neural data—stops being used under the strict control governing health care and starts being offered on shelves, over the internet, for other purposes, without any control,” she said, stressing that products have already been made available to anyone interested, like headbands and helmets capable of monitoring and storing information from users’ brains.
“Today, examples of products and practical non-therapeutic use are few in number, but considering the speed with which this market is evolving, if we don’t get ahead of the curve and establish some rules and some protections for people’s mental integrity, we’ll miss the timing. The number of patents in neurotechnology has simply doubled in the last five years, and more and more companies—including the big techs—have become interested in the potential of direct interaction between brains and machines—an interaction that opens up infinite possibilities for developing new products,” she concluded.
The prosecutor’s considerations are backed up by data from a report released by Unesco in 2023. In the document, the organization states that the world is “on the threshold of a new technological revolution.” It points out that, from 2013 to 2023, global government investment in neuroscience-related research exceeded $6 billion, while private investment from 2010 to 2020 reached $7.3 billion.
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.”
