In May, 2024 we reported on the publication of one of the journalistic pieces developed by our Ethics, Science, and the Public Fellows through a collaboration with Journalism Professor, Elena Conis, and her graduate students. Now, another piece resulting from that experiment has been published in The Boston Globe by then Postdoctoral Fellow José Muñoz . The article has been reproduced below:
Tech is coming for your brain data
How a Chilean politician turbocharged the ‘neurorights’ movement.
Published Sep 5 2024
By José M. Muñoz, Laura Isaza, and Tarini Mehta
Privacy advocates like Girardi worry that when the information inside our skulls becomes available to companies, that data becomes at risk for unscrupulous profiteering. They argue that we are hurtling toward a future with no guardrails on or oversight of how this technology is developed or deployed. Which is exactly why Girardi scanned his brain using Emotiv’s device and then sued the company to erase the images and data from the company’s servers.
EEGs: Now at a store near you
Girardi’s saga began in February 2022, when he bought Emotiv’s Insight headset for nearly $500; the company describes the device as allowing users to “turn science fiction into reality.” (“EEG” stands for electroencephalogram, a test commonly performed by medical professionals to scan the brain for disorders like epilepsy or stroke.) Online reviews rave about Insight’s range of applications — some of which sound more dubious than others. YouTubers and techreviewers tout its ability to optimize your mind for a “flow state” and meditation, or to detect the impact of certain diets on brain activity. On Twitch, you can watch videos of gamers supposedly playing Super Mario Bros or Halo using only an EEG headset — with tags like “mind control” in their descriptions.
Those reviews provide an optimistic vision of the technology, but in reality, EEG technology has existed for years and is capable of capturing only certain information from the brain. “Brain-computer interfaces” is a catchall term for technologies that connect human brain activity with computers. They collect electrical signals from the brain and learn to identify patterns in the signals and translate them into actions like moving a mouse up or down on a computer screen. That’s what futurists mean when they say BCIs allow us to control computers with our minds. An EEG is technically a BCI, but it’s much more limited than Insight’s champions would have you believe.
In fact, an EEG is “kind of the worst brain measurement [tool],” says UC Berkeley neuroscience professor Jack Gallant. Even the most advanced devices cannot detect what kinds of information the brain is processing or the conclusions a person might be reaching, Gallant says.
But there’s a reason investment in consumer-oriented EEGs is growing. The devices are relatively cheap and readily available, and they do not require a medical license to use.
On top of that, artificial intelligence is starting to change the game. Developers are starting to use AI to find patterns in brain waves captured by EEGs and draw increasingly sophisticated inferences about individuals’ emotions and behaviors. Some researchers have managed to predict political ideologies from brain data. In 2019, the Chinese government used a US-manufactured EEG headset called BrainCo to monitor the attention levels of 10,000 schoolchildren.
That worries experts like Roberto Andorno, a lawyer and associate professor of bioethics and biomedical law at the University of Zurich, in Switzerland.
Brain data, he says, can be used for a long list of nefarious purposes: blackmail, manipulation, suppression of political dissent. “I imagine a totalitarian government is very interested in knowing what people think about them,” Andorno says.
Andorno also worries about the threats posed to workers’ rights.
Companies could require their employees to wear headsets during the workday — an extension of other methods already used to surveil workers. Andorno says there have already been instances of companies tracking their employees’ concentration levels and even whether they might be depressed. “Why,” he says, “should a company know that?” In Australia and the United States, some trucking companies have introduced an EEG device designed by SmartCap Technologies to monitor their drivers’ fatigue levels. Access to that information creates a risk for companies to exploit and abuse it — for example, by invading employees’ privacy if a medical condition becomes apparent through brain activity monitoring.
At the time that Girardi used Emotiv’s Insight device, the company’s policiesstated that users could request the deletion of all their personal data from Emotiv’s platform — except for EEG data.
Emotiv reserved the right to hold and to share EEG data “with third parties for scientific and historical research purposes.” Girardi wasn’t buying it. He filed a constitutional protection lawsuit in the Santiago Court of Appeals in April 2022.
“We must never give up our rights but enforce them. Human rights treaties are very clear on this matter,” says a member of his legal team, Natalia Monti. Brain data, she also argues, “is sensitive data that deserves maximum protection.” Emotiv appealed the motion, arguing that users agree to the company’s privacy policy of their own volition and that any brain data used for scientific research anonymizes the user.
On May 24, 2023, the Santiago Court of Appeals ordered Emotiv to immediately delete all of Girardi’s EEG data but also ruled that the company’s privacy policies were not unconstitutional in Chile. Girardi appealed to the Chilean Supreme Court, arguing that “there was a clear violation of the rights that protect mental integrity,” Monti says. On Aug. 9, 2023, Chile’s Supreme Court ruled in Girardi’s favor. It held not only that Emotiv had to delete Girardi’s brain data but also that Emotiv must “refrain from selling the Insight device in Chile until it modifies its privacy policies regarding the protection of brain data.”
The Emotiv team declined requests for comment for this story.
The ruling was the first of its kind, making Chile the first country in the world to judicially regulate brain data usage. Other governments — in Argentina, Brazil,Mexico, and some US states — are now looking to the case in Chile as they begin implementing their own regulations about brain data.
According to many neuroethicists, brain data is different from other biomedical data. As soon as it is matched with other kinds of data — including that from smartphone apps, social media interactions, voice recordings, and biometrics — identifying a person can be quite easy, using machine learning and big data techniques, even if their brain data was previously anonymized. A research team from Mayo Clinic in Rochester, Minn., for example, was able to reconstruct people’s faces from their MRI scans and identify participants with facial recognition software.
That being said, many users think the potential benefits of the technology outweigh such privacy risks or are unaware of how companies may use their data. (Just think of smartphones and social media — we all signed up before the harms became clear.) That’s why, says Andorno, regulators should take action before BCIs like the Insight headset become a regular part of life: “The law has to prevent harm to people.”
And the clock is ticking.
Time to regulate the ‘Wild West’ of brain data
According to the United Nations, private investment in BCIs increased more than twentyfold between 2010 and 2020, to a total of $33.2 billion in that time frame. Governments, too, are allocating resources to the development of this technology. In 2013, the Obama administration launched The BRAIN Initiativeunder the National Institutes of Health. Rafael Yuste, a neuroscientist at Columbia University who led the group of researchers that proposed the initiative, likened it to the Human Genome Project, with its fundamental goals rooted in understanding the brain in order to develop health innovations targeting neurological diseases. The initiative currently involves 550 labs around the country and has an annual budget of about $900 million to support the development of neurotechnology of all kinds, including ultrasound stimulationand optogenetics. Similar initiatives have emerged in countries including China, Japan, South Korea, Canada, and Israel.
Yuste also established the Neurorights Foundation, an independent nonprofit organization that sparked the larger movement to raise ethical concerns about neurotechnology use and advocate for protections, especially against the sale and commercial use of brain data. Neurorights advocates like Yuste are not particularly worried about medical neurotechnology, because it is already regulated by patient privacy laws in most countries, like the Health Insurance Portability and Accountability Act (HIPAA) in the United States. But for nonmedical purposes, the world of brain data is the legal Wild West.
Several international governance bodies, including the Organization of American States and the United Nations, have outlined human rights principles related to neurotechnology. In 2022, the UN Human Rights Council commissioned a report analyzing the human rights implications of neurotechnology. The report is scheduled to be submitted this September or October.
Advocates say regulations can’t come soon enough. The neurotechnology market is poised to be valued at over $55 billion by 2033. Regulation will set the boundaries of what private companies and governments can do with individuals’ brain data. Moving quickly, Yuste says, is critical.
But efforts to regulate are facing pushback from the private sector: At the time Girardi bought the Insight device, Emotiv’s privacy policies considered brain data to be personal data. But the company’s updated policies, posted June 2023, state that “EEG data, on its own, is not Personal Information.”
Yuste says it could not be more personal, though. “The brain,” he says, “is not just another organ. It encompasses all of our cognitive abilities, every thought, every decision. . . . It is the essence of our humanity.”
José M. Muñoz served as an expert for the Supreme Court of Chile on the landmark lawsuit Girardi v. Emotiv. At the time this story was reported, he was a postdoctoral fellow at the UC Berkeley’s Kavli Center for Ethics, Science, and the Public. Follow him on X @jmmunoz_.
Laura Isaza reports on science, the environment, and sports. She has reported for NPR’s All Things Considered, KALW, Atmos, The Dirtbag Diaries, and Planet Forward.
Tarini Mehta is a California-based reporter who focuses on health, housing, and governance. She has previously written for The Mercury News, India Today, The Diplomat, The Hindu, and The Print.