Bipartisan legislation introduced in the U.S. Senate on June 14 would protect consumers’ private health data.
The Protecting Personal Health Data Act, co-sponsored by Senators Lisa Murkowski, R-Alaska, and Amy Klobuchar, D-Minn., addresses the issue of home DNA testing kits and health data tracking apps giving companies access to unprecedented levels of consumer health data. Current laws do not adequately address the emerging privacy concerns presented by these new technologies, the senators said.
Their bill would require the Secretary of Health and Human Services to promulgate regulations for new health technologies such as health apps, wearable devices like Fitbits, and direct-to-consumer genetic testing kits that are not regulated by existing laws.
The senators noted a Washington Post article that said a pregnancy tracking app has been selling user data to employers, and another report that revealed that health apps for users battling depression or trying to quit smoking are selling personal details they collect to third parties, like Google or Facebook, without user consent. A subsequent poll showed that users of these apps cared about privacy, but thought the digital trackers were too valuable to give up.
Current laws including the Health Insurance Portability and Accountability Act of 1996 were enacted by Congress back when many of these devices, social media sites and DNA testing companies collecting and sharing health data today did not exist.
Murkowski said she continues to hear from Alaskans concerned about the privacy of personal data.“This legislation takes important steps to ensure guidelines are created for security and privacy protections of modern health information,” she said. “Our policies must evolve to keep up with advancements in recent technology. By enacting important modern protections for consumers’ personal health data, our bill puts the privacy of American consumers first.”
