Three Democratic Senators have introduced a bill that seeks to improve personal health data privacy by preventing companies from disclosing personally identifiable health information for advertising purposes. The legislation was introduced after two recent enforcement actions by the Federal Trade Commission (FTC) against GoodRx and BetterHelp over disclosures of personal and health information to social media and big tech firms after informing consumers that their health information would be kept private and confidential, and an enforcement action against a data broker – Kochava – for selling geolocation data, which could potentially be used to identify women who visited reproductive healthcare facilities.
The legislation – The Upholding Protections for Health and Online Location Data (UPHOLD) Privacy Act – was introduced by U.S. Senators Amy Klobuchar (D-MN), Elizabeth Warren (D-MA), and Mazie Hirono (D-HI). In addition to prohibiting the use of personally identifiable health information for advertising purposes, the bill seeks to ban data brokers from selling geolocation data, and limits the ability of companies to collect and use personal health information without express consent from consumers. The bill will also give Americans greater access to and ownership over their personal health information.
“For too long, companies have profited off of Americans’ online data while consumers have been left in the dark, which is especially concerning in light of reports that some social media companies collect data related to reproductive health care,” said Sen. Klobuchar. “By stopping the use of personal health information for commercial advertising and banning the sale of location data, this legislation will put new protections in place to safeguard Americans’ privacy while giving consumers greater say over how their sensitive health data is shared online.”
The ban on the use of personal health information for commercial advertising would apply to information collected from any source, including medical centers, fitness trackers and other wearable devices, and web browsing histories, but would not apply to public health campaigns. New data minimization rules would be introduced to restrict the health data that can be collected by companies, and there would be a ban on the sale of precise location data to and by data brokers.
“Since the reversal of Roe, data brokers, and tech firms have continued to profit from the private health and location data of millions of Americans, including those seeking reproductive health care services,” said Sen. Warren. “The UPHOLD Privacy Act would protect consumers’ sensitive data and their right to privacy.”
“With Republicans working to ban and criminalize reproductive health care nationwide, it’s critical we safeguard the reproductive data privacy of everyone in our country,” added Hirono. “Everyone should be able to trust that personal data about their bodies and their health care will be protected. By restricting the sale and use of personally-identifiable health data, this bill will give patients and providers the peace of mind that their private information is secure.”
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