This article was originally published by the Electronic Frontier Foundation on April 9.
The digitization of medical records is being pitched to the public as a way to revolutionize healthcare. But rapid technological innovation and lagging privacy laws are leaving patients — and their most sensitive information — vulnerable to exposure and abuse, especially in this age of “big data.” The Electronic Frontier Foundation (EFF) is launching a new medical privacy project today to identify the emerging issues and to give advocates the information they need to fight for stronger protections for patients.
“You assume that the decision about when to disclose medical data — like if you’ve had an abortion or have a serious heart condition — is yours and yours alone. But that information may be circulated in the process of paying for and providing treatment, or as part of mandated reporting,” said EFF Senior Staff Attorney Lee Tien. “As the American medical establishment moves towards complete digitization of patient records, it’s important to take a hard look on what that means for everyone’s privacy, and what we should do about it.”
EFF’s project explores the unsettled areas of medical privacy law and technology, including a primer on how law enforcement might get access to your health information or how the government might be able to collect it by claiming that it’s necessary for national security. There’s also a detailed discussion of public health reporting systems and how federal health laws give patients some rights but take others away. EFF will add more topics in the months to come.
“Genetic testing provides a striking example of some of the challenges we face with protecting medical data. Genetic data is uniquely identifiable and can be easily obtained from cells we shed every day,” says EFF Activism Director Rainey Reitman. “But we have weak laws protecting this highly sensitive data.”
EFF’s work on the medical privacy project is supported by a grant from the Consumer Privacy Rights Fund of the Rose Foundation for Communities and the Environment.
For EFF’s full medical privacy project: