Tag: data

The MIND Act: Congress’s Attempt to Protect Americans’ Brain Data

Neurotechnologies are devices that have been used in the clinical context for decades to collect data about brain or nervous system activity. Examples include the use of magnetic resonance imaging (MRI) to diagnose brain tumors, electroencephalograms (EEG) to predict strokes, and deep brain stimulation (DBS) to treat symptoms of Parkinson’s disease.

In addition to the clinical context, the consumer market now accounts for 60% of the global neurotechnology landscape. By 2034, the global neurotechnology market size is predicted to reach around $52.86 billion. Neuralink, a company founded by Elon Musk, creates implantable brain-computer interfaces (BCIs), which are used to restore personal control over limbs, prosthetics, and communication devices. Other consumer neurotechnologies include EEG headsets that produce real-time brain data and earbuds that measure brain activity from the ear canal.

Several issues are raised by the use of neural data in both the clinical and consumer sectors. The production, distribution, and use of these neurotechnologies creates unique privacy, discrimination, and security concerns. There have even been efforts in the criminal justice system to identify deception from brain activity. Scholars have proposed and debated the necessity of a new category of rights called “neurorights,” which include mental privacy, mental integrity, and cognitive liberty.

In response to these growing concerns, Democratic Senators Chuck Schumer (D-NY), Maria Cantwell (D-WA) and Ed Markey (D-MA) recently introduced the Management of Individuals’ Neural Data Act of 2025 (the MIND Act). This bill aims to protect Americans’ brain data from exploitation and was referred to the Committee on Commerce, Science, and Transportation.

The MIND Act defines neural data as “information obtained by measuring the activity of an individual’s central or peripheral nervous system through the use of neurotechnology.” It also provides an expansive definition of neurotechnology as any “device, system, or procedure that assesses, monitors, records, analyzes, predicts, stimulates or alters the nervous system of an individual to understand, influence, restore, or anticipate the structure, activity, or function of the nervous system.” This definition encompasses basic tools like MRI and EEG, but also covers BCIs and consumer products like smart glasses and smart watches.

The proposed legislation directs the Federal Trade Commission (FTC) to study how neural data and other related data, which can infer psychological states or neurological conditions, are currently governed. It also compels the FTC to identify gaps in current governing frameworks, including the Health Insurance Portability and Accountability Act (HIPAA). At the federal level, HIPAA defines health information expansively, but likely fails to protect neural data in several clinical contexts.

At the state level, neural data is not clearly included in most consumer privacy laws. In response to this, Colorado, California, Montana, and Connecticut have led the way by passing privacy laws that categorize neural data as highly sensitive information. If passed, the MIND Act would establish a federal standard that follows in these states’ footsteps.

While it does not go so far as to create a new private right of action, the MIND Act does create a roadmap for future FTC rulemaking or broader privacy legislation. It may also play an important role in healthcare product development as neurotechnology and AI are integrated and developed in tandem. Perhaps more importantly, it is a clear message from Congress about the importance of privacy protections in an ever-changing technological landscape.

Detaining Medical Information: The Growing Threat to Immigrants’ Health Care Access

Emboldened by President Trump, armed and masked immigration enforcement agents are increasingly threatening the public and conducting raids to detain people whom they suspect are undocumented immigrants. Attention, both in popular and social media, has primarily focused on immigration enforcement in areas once considered safe, including raids occurring in schools, public parks, and grocery stores. However, these highly publicized incidents overshadow an alarming immigration enforcement and detention strategy—confiscating immigrants’ medical information. 

This past June, the Trump Administration granted Immigration and Customs Enforcement (ICE) officials access to the personal information of millions of Medicaid enrollees. This information included home addresses, ethnicities, social security numbers, and even immigration status. Initially, U.S. Department of Health and Human Services (HHS) officials stated that the goal of the transfer was to disqualify those improperly enrolled in Medicaid. The Associated Press, however, obtained a copy of the agreement between the Centers for Medicare & Medicaid Services and the Department of Homeland Security, which indicates that the purpose of the data is to allow ICE to “find the location of aliens.” It seems that it is no coincidence that the states targeted in the data transfer—California, New York, Washington, Oregon, Illinois, Minnesota, and Colorado—all have programs that allow non-citizens to enroll in Medicaid. 

In response, 20 states sued the federal government, arguing that the data release violated federal health privacy laws, including the Health Insurance Portability and Accountability Act (HIPAA). In August, a federal judge issued a partial preliminary injunction precluding ICE from using the accessed data. Citing key cases such as FCC v. Prometheus Radio Project and FCC v. Fox Television Stations, Inc., Judge Vince Chhabria found that the government’s decision was arbitrary and capricious. As the case continues to play out in the courts, it is imperative to discuss its implications for privacy concerns and, more importantly, the intense chilling effect it will create, both in the present day and potentially for decades to come.

Now that such medical information, which includes citizenship status, is in the possession of ICE, there is certainly a fear that this information will be used to track down and detain immigrants (or those who may appear as undocumented immigrants to authorities). But beyond the looming threat of ICE using the data to detain people, there is also a harmful chilling effect: immigrants are reporting that they are avoiding health care facilities entirely. 

The relationship between immigrants and the United States health care system was already precarious. Examples of systematic, repeated racism in the health care system have already strained migrants’ trust. Furthermore, there are several documented cases in which doctors have engaged in medical care without informed consent or conducted unethical research on immigrants. These stories and incidents have created enduring narratives that understandably engender distrust in the American health system. As a result of these deeply embedded fears, immigrant communities are more likely to attempt to avoid the health care system altogether until their health situation becomes dire. 

ICE’s entanglement in our health care system is a moral and economic injury. Managing an effective health care system needs more than just surgical kits, prescriptions, and check-ins. It requires fostering a safe environment where people, regardless of their citizenship status, can receive the care they need. Furthermore, it is commonly cited that immigrants invest more in American health care than they deduct. Several health policy scholars have demonstrated that ensuring communities have access to preventative health care is cost-saving for the country’s overall economy.

Freely handing sensitive Medicaid data to ICE is a betrayal of the core values of health care: autonomy, trust, and privacy. The fear of detention since Trump’s first presidency already loomed over immigrant communities. However, this distrust and fear are now magnitudes worse due to the cruel and novel tactics now being employed by ICE. Embedding immigration enforcement within health care is harmful; some may even argue that the goals of the two institutions are inherently at odds. As ICE raids increase in intensity across the country and immigrants become increasingly aware that their data is now in possession of ICE, this fear––and resulting harm––will grow.