A recent report highlights significant concerns over an emerging health privacy crisis in the United States, driven by invasive surveillance practices and inadequate legal protections. Patients are reportedly refraining from seeking necessary medical care due to fears that immigration agents could target them within healthcare settings, exacerbating treatment delays and deteriorating health outcomes.
The Electronic Privacy Information Center (EPIC) published the report, which attributes these issues to outdated privacy legislation and the rapid evolution of digital health systems. These systems facilitate the tracking, analyzing, and unauthorized access of sensitive health data by both commercial entities and government authorities.
EPIC, a nonprofit organization based in Washington, D.C., conducted an extensive review that encompassed federal and state regulations, court decisions, agency protocols, and a range of case studies. Their findings reveal a troubling trend: health information is increasingly being collected and shared beyond the medical context, often for surveillance and enforcement purposes, thus discouraging individuals from seeking care.
The report underscores the commercialization of health data as a core contributor to the crisis. It notes that the market for personal information has thrived in the absence of a comprehensive federal data privacy law. Health data, which is governed by different standards, has become a lucrative target for data brokers, leading to the creation of a largely unregulated market where information on diagnoses, treatments, and patient interactions can be easily bought and sold.
This data is frequently harvested outside traditional healthcare environments through mobile applications, web interactions, and online searches. As a result, patients are often unaware that their personal health information is being used for purposes such as advertising, insurance risk assessment, or governmental oversight, all without their explicit consent.
Control over such information becomes tenuous once sold, leading to increased risks such as discrimination, profiling, and inflated healthcare costs, which may deter individuals from pursuing necessary medical attention. Investigations, such as those conducted by WIRED and The Markup, have uncovered instances where major technology platforms, like Google and Facebook, have exploited health data for targeted advertising, despite existing regulations intended to safeguard patient privacy.
Health privacy experts have noted that these practices potentially violate the Health Insurance Portability and Accountability Act (HIPAA), which is designed to limit the disclosure of personal health information without patient consent. The report highlights how large tech companies contribute to the issue by integrating surveillance capabilities throughout health and advertising ecosystems, while also lobbying for relaxed data collection regulations.
As the report indicates, the intertwined nature of digital technologies and healthcare raises significant public health implications, particularly for vulnerable populations that are already hesitant to engage with healthcare systems due to concerns about surveillance or potential legal repercussions. According to EPIC senior counsel Sara Geoghegan, the situation is dire, with access to care becoming increasingly hampered by stigma, costs, and governmental interference.
