Patient privacy laws need to keep pace with technology advances

More than 20 years ago, Congress passed the Health Insurance Portability and Accountability Act. The landmark health privacy law made it clear that your personal health data would be kept between you and your healthcare providers. Fast-forward to today and that expectation of privacy isn’t so simple.

Consider the millions of women who used a pregnancy app that subsequently shared users’ personal health data with certain employers and insurance companies. That included information on those who had high-risk pregnancies and other birth complications. Ask the users of health apps that help people to manage depression or try to quit smoking—these apps are reportedly selling the personal details that they collect to third parties. And guess what? Most people don’t even realize that they unknowingly consented to this practice when they started using the apps.

New technologies have made it easier for people to monitor their own health, but health tracking apps, wearable technology devices, and home DNA testing kits have also given companies access to your personal—and private—health data with very few rules of the road in place regulating this practice. A study published earlier this year confirmed that countless health apps are collecting some of your most intimate data and sharing your personal details with third parties—like Google or Facebook, among others.

That’s why I introduced the Protecting Personal Health Data Act with Sen. Lisa Murkowski (R-Alaska). This legislation will strengthen privacy and security protections for consumers’ personal health data by requiring that meaningful health data privacy regulations are put in place to keep up with advances in technology. We need safeguards to protect consumers’ sensitive health data collected by innovative technologies such as health mobile apps, wearables and direct-to-consumer genetic testing.

And don’t just take it from me. Consumer Reports supports my bill, saying: “The current legal framework for privacy around health data is out of date and incomplete. Protecting the legal right to privacy for users of new health technology is about ensuring consumers have the freedom to take advantage of promising new health technology without losing the right to privacy or facing harm such as discrimination.”

Congress should pass my bill to require that regulations are issued to ensure that Americans are in charge of their own personal health data. Emerging technologies like health apps and wearable devices can undoubtedly make our lives easier, but they shouldn’t come at the expense of our privacy.

It’s time for action. Congress has a responsibility to ensure that our laws keep up with advances in technology and give patients the privacy and protections they expect. And that’s exactly what the Protecting Personal Health Data Act will do.

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