January 22, 2020

Column: Protecting Americans' private health data - The Globe

By Sen. Amy Klobuchar December 10, 2019 17 0

New technologies have made it easier for people to monitor their own health. But whether it’s health tracking apps, wearable technology devices or home DNA testing kits, companies have been given access to your personal, and private, health data with very few rules of the road in place regulating this practice.

More than 20 years ago, Congress passed the Health Insurance Portability and Accountability Act — or HIPPA. This landmark health privacy law limited the sharing of your personal health data throughout the health care delivery system to people like your doctor and hospital, but the law didn’t prepare for the sophistication and affordability of the technology we have available today, and as such, that expectation of privacy isn’t so simple.

Just ask St. Paul resident, Dave Krelic, who received letters from a Puerto Rican data-handling company — Inmediata — saying that the medication his family was taking may have been disclosed online. Or Diana Diller, who is one of the millions of women who used the pregnancy app Ovia, which shared users’ personal health data including information on those who had high-risk pregnancies and other birth complications with certain employers and insurance companies.

And what about the health apps like the ones people use to help manage depression or try to quit smoking?

A study published earlier this year confirmed that many of these apps are collecting your most intimate data and sharing your personal details with third parties. Most people don’t even realize that they consented to this practice when they started using the app.

That’s why I introduced the bipartisan Protecting Personal Health Data Act with Sen. Lisa Murkowski from 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 that is collected by innovative technologies not regulated under existing health privacy laws.

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 Consumer Reports supports my bill, saying: “The current legal framework for privacy around health data is out of date and incomplete.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.”

Emerging health technologies can undoubtedly make our lives easier, but they shouldn’t come at the expense of our privacy. Congress should pass my bill to ensure that Americans are in charge of their own personal health data, how it is stored, analyzed and shared — and with whom. Our laws need to keep up with 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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