Exploring the unintended consequences of pioneering neurorights legislation on medical research and neurotechnology development
In a landmark 2023 decision, the Supreme Court of Chile ordered a U.S.-based brain-computer interface company to erase the brain data it had collected on a former Chilean senator. This case marked a global first—the initial enforcement of groundbreaking "neurorights" provisions that Chile had recently embedded in its constitution. These provisions were designed to protect citizens' brain data from commercial exploitation and manipulation, positioning this South American nation at the forefront of what many are calling the next frontier of human rights 1 .
Chile became the first country to constitutionally embed neurorights protections, setting a global precedent.
Scientists warn these protections may inadvertently hinder treatments for neurological conditions.
"Could these well-intentioned laws—crafted to protect mental privacy and identity—actually hinder the very treatments that patients with neurological and psychiatric conditions desperately need?"
Neurorights represent a proposed new category of human rights specifically designed to protect people's brains and mental experiences from misuse of neurotechnology. These rights have gained urgency as companies like Emotiv and Muse develop consumer devices that can measure brain activity, and Apple patents earbuds with electrodes capable of capturing electroencephalographic (EEG) data 1 .
Preventing neural activity from being deciphered without consent
Protecting against technology altering personality or consciousness
Preventing neurotechnology from tampering with decision-making abilities
Ensuring equitable distribution of cognitive enhancement technologies
Guarding against prejudices embedded in neurotechnology algorithms
"I became very concerned with this through our own experiments with mice. About a decade ago, we were able to decode the activity of the visual cortex and manipulate it selectively using laser-based technology."
Chile's current debate over neurorights echoes earlier controversies surrounding Law 20,584—the Patients' Rights Law implemented in 2012. Designed to protect vulnerable populations from potential medical abuse, this legislation instead produced "enormous, and even possibly irreversible, damage to research in Chile," particularly for pathologies requiring urgent attention like neuropsychiatric diseases 4 .
The law created significant barriers to research involving patients who lack capacity to consent, such as those with disorders of consciousness or severe cognitive impairments. Where previously researchers could work with family members or legal representatives to include these vulnerable populations in studies, the new regulations erected such formidable administrative hurdles that many studies became practically impossible to conduct 4 .
The legislation effectively created a protectionist paradigm that, in practice, denied vulnerable patients access to innovative treatments and the potential benefits of research participation.
Building on the constitutional reforms, the neuro-rights bill currently under consideration in Chile aims to protect people from potential abusive use of neurotechnologies. However, many experts fear that a literal interpretation of this law could produce "severe negative effects both in the development of neuroscience research and medical practice in Chile," potentially interfering with current treatments for countless patients suffering from neuropsychiatric diseases 4 .
The legislation also faces criticism for its conceptual ambiguity. As one analysis noted, the proposed Latin American Parliament Model Law on Neurorights—similar to Chile's approach—confuses related but distinct concepts like "brain data" (quantitative physiological metrics) and "mental data" (subjective experiences like thoughts and emotions). This lack of conceptual clarity could lead to ambiguous or inadequate protections 3 .
To understand the very real consequences of such legislation, consider the challenges facing researchers studying disorders of consciousness—conditions where patients have sustained severe brain injuries and show minimal signs of awareness.
| Technology | Medical Application | Potential Impact of Restrictive Laws |
|---|---|---|
| Deep Brain Stimulation | Parkinson's disease, depression, OCD | Limited access for patients who might benefit |
| Brain-Computer Interfaces | Paralysis, communication disorders | Delayed development and implementation |
| EEG-Based Therapies | Sleep disorders, attention issues | Reduced innovation in non-invasive approaches |
| Neurofeedback | ADHD, anxiety disorders | Restricted availability of complementary treatments |
To understand what's at stake in this regulatory debate, it helps to understand the key components of modern neurotechnologies. These tools form the foundation for both current treatments and future innovations that could transform how we treat brain disorders.
Measure electrical brain activity for studying brain patterns in various states
Deliver targeted electrical pulses for modulating neural circuits in movement disorders
Translate neural signals to commands for restoring communication for paralyzed patients
Interpret brain scan data for identifying biomarkers for neurological conditions
Translate brain activity into information for understanding how the brain represents thoughts
Wearable technology that captures brain data, blurring lines between medical and consumer applications
The fundamental challenge Chile faces—and that other nations will soon confront—is how to protect individuals' rights and privacy without stifling the innovation that could alleviate genuine human suffering. The country stands at a crossroads, with the potential to either create a balanced framework that protects both people and progress, or to implement regulations that push promising treatments further out of reach for vulnerable patients.
UN human rights experts have emphasized that "the biggest problem is it's very hard to take a tech company to court," suggesting that enforcement of existing regulations may be as important as creating new ones 1 . This perspective is echoed by critics who argue that applying existing human rights standards should take precedence over creating entirely new legal categories 1 .
The conversation around neurorights represents a crucial societal debate about how we navigate the intersection of technology, biology, and human identity. As these technologies continue to evolve, the balance between protection and progress will become increasingly important—not just for Chile, but for the global community.
The story of Chile's neurorights legislation serves as a powerful case study in the complex interplay between ethics, law, and science—reminding us that the road to unintended consequences is often paved with good intentions.