The report warns that surveillance and ICE are pushing patients away from medical care

When immigration agents Hospitals and private companies are allowed to buy and sell data that reveals who seeks medical care, patients decline, treatment is delayed, and health outcomes worsen, According to a new report Describes the growing “health privacy crisis” in the United States due to surveillance and weak borders on law enforcement.

The report, published by the Electronic Privacy Information Center (EPIC), attributes the problem to outdated privacy laws and rapidly expanding digital systems that allow health-related information to be tracked, analyzed, hacked, and accessed by both private companies and government agencies.

EPIC, a Washington-based nonprofit focused on privacy and civil liberties, based its findings on a review of federal and state laws, court rulings, agency policies, technical research, and documented case studies examining how health data is collected, shared, and used across government and commercial systems.

“Unregulated digital technologies, mass surveillance, and weak privacy laws have created a health privacy crisis,” the report says. “Our health data is increasingly being collected, sold, and used beyond our control.”

The organization found that health data routinely escapes medical settings and is repurposed for surveillance and enforcement, increasingly preventing patients from seeking care.

EPIC identifies the sale of medical and health-related data as a key driver of the crisis. “Trafficking in individuals’ personal information has become a thriving industry in the absence of a federal data privacy law, and health information is no exception,” the report says.

The report describes a largely unregulated market in which data brokers buy, aggregate and resell information that can reveal diagnoses, treatments, medications and visits to medical facilities. This data is often collected outside traditional healthcare settings — through apps, websites, location tracking, and online searches — and can be reused for advertising, insurance risk scoring, or government surveillance without patients’ knowledge or consent.

Once sold, EPIC notes, the information may be difficult or impossible to control, increasing the risks of profiling, discrimination and higher costs of care, while discouraging people from seeking treatment in the first place.

Last year, WIRED reported that Google’s advertising ecosystem allowed marketers to target American consumers Based on sensitive health indicatorsincluding chronic diseases, using data provided by third-party intermediaries, despite company rules prohibiting such use. The investigation found that advertisers could reach millions of devices linked to conditions such as diabetes, asthma or heart disease through audience segments traded within Google’s ad technology platform.

In a 2022 investigation, The Markup examined the websites of Newsweek’s top 100 hospitals in the United States and found that 33 of them were Send sensitive patient information to Facebook Through Meta Pixel, an online tracking tool. Reporters documented the pixel relaying details when users tried to schedule appointments, including the names of doctors, medical specialties and search terms like “pregnancy termination,” along with IP addresses that can often be linked to individuals.

Health privacy experts told The Markup that some of the data shared may have violated the Health Insurance Portability and Accountability Act, or HIPAA, the nation’s primary law governing the privacy of medical records, which is supposed to limit how hospitals can disclose identifiable patient information to third parties without consent or specific contracts.

EPIC argues that Big Tech companies have become central players in the health privacy crisis by integrating surveillance tools across health ecosystems, advertising, and data brokers while pressuring policymakers to relax restrictions on data collection. The report warns that these practices have public health consequences, especially for people who already worry about government surveillance or scrutiny.

“We are facing a health privacy crisis where access to care becomes inaccessible due to criminalization, costs, stigma and increasing government interference in medical care forcing people to delay or forego care, worsening their health,” says Sarah Geoghegan, Senior Advisor at EPIC.