Worldwide Campaign for Neurorights Notches Its First Win

Chile plans to regulate all neurotech and ban the sale of brain data

7 min read
Image of a brain on a blue background, with lines showing different parts of the brain.
Edmon De Haro
Blue

The government of Chile is taking a stand: Its citizens must be protected from technologies that are capable of mind control, mind reading, or any other nefarious interference with their brains. While such concerns used to be relegated to conspiracy-theory chat rooms and science fiction, now they’re subject to debate by senators. Thanks to a constitutional amendment that was passed by the National Congress of Chile and signed by the president, the people of Chile are the first in the world to be granted a new kind of human rights—“neurorights”—which advocates say are made necessary by rapid advances in neurotechnology.

Neurotech includes brain implants that can read information from the brain, translating its electrical signals into, for example, movement commands for a prosthetic arm. Other implants change the brain by stimulating specific regions with electrical pulses. Such implanted stimulators are currently approved for only a few medical conditions, but Elon Musk has claimed that his neurotech company, NeuralinkCorp., is developing implants that may one day be used by everyday people to enhance their cognitive abilities.

There are also a host of noninvasive technologies that can record from or stimulate the brain, some of which are approved for medical use. Other companies sell noninvasive neurotech directly to consumers for applications such as meditation, focus, and sleep; these devices need only meet the safety standards that govern consumer gadgets, not the far stricter regulations for medical devices regarding both safety and proof of clinical benefit.

Chile’s congress is currently considering a bill that goes beyond the constitutional amendment’s broad declaration of principles. The “neuro-protection” bill mandates that all neurotech devices be subjected to the same regulations as medical devices, even if they’re intended for consumer wellness or entertainment. It also states that neural data will be considered equivalent to a human organ—which would prohibit the buying or selling of such data.

“Neuroscience is not just another field of knowledge,” Senator Guido Girardi, the lead sponsor of the bill, tells IEEE Spectrum in an email. “It’s similar to what atomic energy was in the 1950s. It may be used to develop a better society, but also to create weapons against humanity.” Girardi says he hopes that Chile will be an example for the world and that other nations and international agencies will adopt comparable regulation.

Indeed, 2022 may be the year that neurorights becomes a hot topic, bringing the young neurotech industry and the human rights community into uncomfortable conversations. Spain’s new Digital Rights Charter includes a section on neurorights, and while it’s a nonbinding framework, it may inspire new legislation. The United Nations’ Secretary-General is also interested; his ambitious agenda, published last September, stated that it’s time to “update our thinking on human rights,” and included neurotechnology in a list of “frontier issues” to be considered. The debate is even coming to the big screen: Werner Herzog, the German film director, is expected to premiere a film about neurorights, Theater of Thought, sometime in 2022.

A man is wearing a silver device that looks like a helmet on his head. The front of the device is marked with a K.\u00a0The Flow headset from Kernel uses near-infrared light to measure blood flow in the brain. Kernel is currently selling the device to researchers, but the company is also developing a consumer model.Kernel

While some neuroscientists and bioethicists support the global campaign, others say Chile is setting a problematic example for the world, and that its rushed regulations haven’t been properly thought through. Concepts such as “brain data” need to be clarified, critics say, because a broad definition could include behavioral data that reflects what’s going on in a person’s mind, which many companies already collect.

The debate can quickly get philosophical: Do people have fixed mental identities throughout their lives? Does anyone have free will? And what do the squiggly patterns of electrical activity that can be recorded from a person’s brain reveal about them? Rafael Yuste, cofounder of the NeuroRights Foundation, in New York City, believes that the technology is forcing such questions upon us. “This is something that affects the essence of what it means to be human,” he says.

The NeuroRights Foundation can claim much of the credit for the developments in Chile, Spain, and the U.N. Yuste, a professor of biology at Columbia University who studies neural circuitry, has been promoting the idea of neurorights for nearly a decade now.

He first raised the issue through his involvement with the U.S. Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative, a US $100 million research effort announced by President Barack Obama in 2013. Yuste next convened a group of neuroscientists, clinicians, ethicists, and engineers to come up with ethical priorities for neurotechnology, which they published in a 2017 Nature paper. With his colleagues at the foundation, he has worked closely with the policymakers who have made the first moves on neurorights. Yuste says he’s been driven by the implications of his own scientific research: “We’re decoding perceptions and memory in mice,” he says, “so it’s just a matter of time until this happens in humans.”

The 5 Neurorights

1. The right to mental privacy

2. The right to personal identity

3. The right to free will

4. The right to equal access to mental augmentation

5. The right to protection from bias

The foundation has delineated five basic neurorights, starting with the right to mental privacy. Medical and consumer neurotech devices collect the most intimate kind of data about us, Yuste says; even if current technologies can decode only a small fraction of it, the data may become increasingly revealing as the technology improves. The next two rights protect against the misuse of neurotech that stimulates the brain and alters its activity: People should have the right to maintain their personal identity and to exercise free will. The final two rights are broader guidelines for society: People should have equal access to mental-augmentation technologies, and the technology should be free from algorithmic bias that makes the technology work better for certain groups.

Legal scholars working with the NeuroRights Foundation say the right to mental privacy is under the most imminent threat. Staff attorney Stephanie Herrmann of Perseus Strategies, a law firm specializing in international human rights, points to a few articles in recent years that have raised alarms about new kinds of neuro-surveillance. One report from the South China Morning Post highlighted a manufacturing company that was supposedly using brain-scanning headsets to monitor its workers’ emotional and cognitive states, while another article from that publication showed schoolchildren wearing headbands that indicated whether they were paying attention to their lesson.

“All of these technologies are so far ahead of where we are in our thinking about them,” Herrmann tells IEEE Spectrum. In an article published in the journal Horizons, Herrmann, Yuste, and Perseus Strategies director Jared Genser argue that the U.N. should set global standards for neurorights, paving the way for nations to pass their own laws. “Regulations are very much part of the future,” Herrmann says, “but establishing an international framework for thinking about how to regulate is a good start.”

Herrmann also notes that human-rights laws often protect individuals against harmful actions by the state, and says that it’s easy to envision misuse of neurotech by governments. Beyond the potential for surveillance, she notes that a 2020 U.N. report on psychological torture contained a discussion of emerging technologies that could be used to inflict new kinds of pain and suffering, naming neurotechnology as one to watch. Torturers could alter a victim’s subjective experience of pain, Herrmann suggests, or interfere with their sense of autonomy.

Yuste worries more about the private companies that are now pouring money into neurotech R&D, particularly those that sell directly to customers and are regulated only as consumer electronics. He notes that many neurotech companies own the data that they extract from users’ brains. “The company is free to decode the data, to sell it, to do whatever they want with it,” he says. Do you feel uncomfortable when you consider how much Facebook knows about you based on your online activity? Now imagine if the company had your brain data as well.

Are you uncomfortable with how much Facebook knows about you? Now imagine if the company had your brain data as well.

Now let’s talk about hype. Critics say that news reports like those in the South China Morning Post vastly overstate the current technology’s capabilities, potentially causing hysteria. “People are being swept up in the hype around how scary these things are,” says Karen Rommelfanger, founder of Emory University’s neuroethics program and the new nonprofit Institute of Neuroethics.

External headsets, like those supposedly worn by workers and students in China, provide fairly crude types of data decoding or stimulation. The most powerful and high-fidelity neurotech devices are those implanted in the brain, but even implants are far from being able to read someone’s thoughts or force them to act against their will. For example, researchers at the University of California, San Francisco, have done pioneering work with implants that can decode words from the brains of stroke patients who have lost the ability to speak, but their latest study used a vocabulary set of only 50 words. Facebook had helped fund that research as part of its effort to build a brain-computer interface for consumers that would translate “intended speech” into text, but in July the company announced that it was abandoning that effort.

Rommelfanger is strongly in favor of national and international discussions of neuroethics, but she says the Chilean efforts on neurorights were rushed and didn’t incorporate enough local input. “If you dig into the local literature, you’ll see that philosophers, clinicians, lawyers, and even digital-rights groups have all offered critiques of the laws.” She says that some Chilean legal and medical experts have raised concerns about turning broad principles into clear rules. For example, she asks, “What does it mean to have psychic continuity?” Some could argue that giving a depressed person antidepressant medication changes who they are—hence, she says, the concerns from medical groups that the neuro-protection law could hamper their ability to treat patients.

Rommelfanger thinks that the approach taken by the Chilean bill for neuro-protection is too heavy-handed; by regulating all neurotech as medical devices, she worries that the country will stifle innovation and prevent startups from bringing forth new devices that will help people. And Chile’s actions are getting international attention: “I’m afraid that other governments are going to move too fast, like what Chile has done, which will foreclose their opportunity to develop neurotech,” she says. It might be wiser, she says, to start with a review of existing human rights and biometric privacy laws around the world and to consider whether those rules apply to the novel technology.

The entrepreneur Bryan Johnson, who founded the Los Angeles-based neurotech company Kernel in 2016, agrees that overzealous regulation is a threat to the young industry. Rafael Yuste “has said that he wants all brain devices to be considered medical devices,” Johnson tells IEEE Spectrum. “I think that would be a crushing blow to the industry.” Johnson says it’s already quite hard and expensive to start a brain-tech company that builds devices for consumers or scientists. “I funded this company with $50 million of my own money,” he says. If every neurotech device had to clear the regulatory hurdles required of medical devices, such as proving efficacy in large-scale clinical trials, he believes the expense would be crippling.

Kernel is currently selling its first noninvasive brain scanner to neuroscientists, but Johnson says the company will have a consumer product ready in 2024. The company has given a great deal of thought to its privacy policy, Johnson says, which is centered around two principles: Individuals should always provide full consent for how their neural data will be used, and they should always have control of their data. “We all have a shared interest in being good actors here,” Johnson says. “If we don’t, they’re going to come in and regulate us.”

This article appears in the January 2022 print issue as "First Win for the Neurorights Campaign."

{"imageShortcodeIds":[]}
The Conversation (1)
John Sergneri
John Sergneri19 Dec, 2021

Over on the New Yorker is an article focused more on fMRI and its uses in mapping brain functions. They posits that there is an issue with "reading minds" and it is closer than you may think, just one machine revolution away.

https://www.newyorker.com/magazine/2021/12/06/the-science-of-mind-reading