At a Glance
- Health data is harvested and sold without patient consent
- Immigration agents entering hospitals deters care-seeking
- Weak privacy laws let tech giants embed tracking tools
- Why it matters: Delayed treatment worsens health outcomes
A new report from the Electronic Privacy Information Center (EPIC) describes a “health privacy crisis” in the United States. Immigration agents entering hospitals and companies trading medical data are causing patients to avoid care, delay treatment, and experience worse health outcomes.
EPIC, a Washington nonprofit focused on privacy and civil liberties, blames outdated privacy laws and rapidly expanding digital systems. These systems let health-related information be tracked, analyzed, breached, and accessed by both private companies and government agencies.
Unregulated Market for Medical Data
The report finds that health data routinely escapes medical settings and gets repurposed for surveillance and enforcement. This trend increasingly deters patients from seeking care.
EPIC identifies the sale of medical and health-related data as a central driver of the crisis. “Trafficking in individuals’ personal information has become a booming industry in the absence of a federal data privacy law,” the report says. “Health information is no exception.”
Data brokers buy, aggregate, and resell information that can reveal:
- Diagnoses
- Treatments
- Medications
- Visits to medical facilities
This data is often collected outside traditional health care settings through apps, websites, location tracking, and online searches. It can be repurposed for advertising, insurance risk scoring, or government surveillance without patients’ knowledge or consent.
Once sold, the information becomes difficult or impossible to control. This increases risks of profiling, discrimination, and higher costs for care while discouraging people from seeking treatment.
Tech Giants Embed Surveillance Tools
Last year, News Of Fort Worth reported that Google’s advertising ecosystem allowed marketers to target US consumers based on sensitive health indicators. This included chronic illness using data supplied by third-party brokers, despite company rules barring such use.
The investigation found advertisers could reach millions of devices linked to conditions such as:
- Diabetes
- Asthma
- Heart disease
These audience segments circulated inside Google’s ad-tech platform.
In a 2022 investigation, The Markup examined the websites of Newsweek’s top 100 US hospitals. They found that 33 hospitals were sending sensitive patient information to Facebook through the Meta Pixel, an online tracking tool.
Reporters documented the pixel transmitting details when users attempted to schedule appointments. This included:
- Doctors’ names
- Medical specialties
- Search terms such as “pregnancy termination”
- IP addresses that can often be linked to individuals
Health privacy experts told The Markup that some of the data sharing may have violated HIPAA. This federal law governs the privacy of medical records and limits how hospitals can disclose identifiable patient information to third parties without consent or specific contracts.
Public Health Consequences
EPIC argues that large technology companies have become central actors in the health privacy crisis. They embed surveillance tools across health, advertising, and data-broker ecosystems while pressing policymakers to loosen constraints on data collection.
The report warns these practices have public-health consequences. The impact is particularly severe for people already wary of surveillance or government scrutiny.
“We face a health privacy crisis where care is inaccessible due to criminalization, costs, stigma, and the rise of government intrusion into medical care which forces people to delay or retreat from care, worsening their health,” says Sara Geoghegan, EPIC senior counsel.
EPIC based its findings on a review of:
- Federal and state laws
- Court rulings
- Agency policies
- Technical research
- Documented case studies
The organization examined 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 concludes. “Our health data is increasingly being harvested, sold, and used beyond our control.”
Key Takeaways
The EPIC report reveals how surveillance and weak privacy protections create a health privacy crisis. When immigration agents enter hospitals and companies trade medical data, patients avoid necessary care.
The unregulated market for health data allows brokers to profit from sensitive information collected through digital tracking. Tech giants embed surveillance tools throughout health ecosystems, enabling targeted advertising based on medical conditions.
Without stronger privacy laws and enforcement, patients will continue delaying or avoiding treatment due to fears about how their health data might be used against them.
