Sens. Amy Klobuchar (D-Minn.) and Lisa Murkowski (R-Alaska) on Friday introduced legislation aimed at safeguarding the privacy of consumer health data, specifically the data involved in DNA testing kits and health tracking apps.
The Protecting Personal Health Data Act would require the secretary of Health and Human Services to create regulations for health data tracking apps, wearable devices such as FitBits and genetic testing kits. The regulations would include a clause to enable consumers to review, change and delete any health data collected by companies.
The legislation would also create a National Task Force on Health Data Protection to evaluate and provide input on any potential cybersecurity and privacy risks of consumer products that use customer health data.
The bill is being introduced in the wake of reports of health data being shared in ways that could violate consumers’ privacy. This includes a report in February that various apps are sharing sensitive health data with Facebook, and reports from The Washington Post that a pregnancy tracking app was selling data about users to their employers and that health apps focused on depression and addiction were selling this data to Google and Facebook.
“New technologies have made it easier for people to monitor their own health, but health tracking apps and home DNA testing kits have also given companies access to personal, private data with limited oversight,” Klobuchar, who is seeking the 2020 Democratic presidential nomination, said in a statement on the legislation.
Murkowski noted in a statement that “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.”
Consumer Reports was one group to endorse the bill. Dena Mendolsohn, the senior policy counsel for the nonprofit, said in a statement that the legislation is necessary since current regulations around health data are “out of date and incomplete.”
Mendolsohn added that “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.”