Today the Electronic Privacy Information Center (EPIC) released Beyond HIPAA: Reimagining How Privacy Laws Apply to Health Data to Maximize Equity in the Digital Age. The report examines and proposes solutions to the health data privacy crisis—a product of unregulated digital technologies, weak privacy laws, the criminalization of many forms of health care, and growing federal attacks on marginalized communities.
Through commercial surveillance, our health data is extracted to profile us, reveal our health conditions, manipulate our behavior, and charge us more for care. These exploitative data practices worsen our health outcomes: without privacy protections, people are pushed away from care. Privacy leads to trust; trust leads to better health outcomes and improved health equity.
Beyond HIPAA lays out the ways Big Tech is harming our health and wellbeing. Big Tech is the architect of the commercial surveillance apparatus that extracts our health and other sensitive personal information. The profiles generated from this data can make health care more difficult and expensive to access as a result of targeted advertising, surveillance pricing, and sales by data brokers to insurance providers.
“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,” said Sara Geoghegan, EPIC Senior Counsel. “When our health data is harvested, sold, and used in harmful ways—like for targeted ads or to set our insurance rates—people’s trust in our health system breaks down even further.”
Read the remainder of EPIC’s press release.
Read the report here.
EPIC will host Beyond HIPAA: Reimagining How Privacy Laws Apply to Health Data to Maximize Equity in the Digital Age on Wednesday, January 21 at 2 p.m. EST (that’s not much lead time, EPIC, given the press release was today!). Panelists will discuss how a lack of privacy protections for health data leads to worse health outcomes and inequities.