With the Extremist Supreme Court Poised to Overturn Roe v. Wade, the Need to Protect Location and Health Data is More Crucial than Ever
Data Privacy Expert: Health and Location Data Protection Act “would fill one of the largest protection gaps in U.S. privacy law”
Washington, D.C. – Today, Senator Patty Murray (D-Wash.), Chair of the Senate Health, Education, Labor, and Pensions (HELP) Committee, joined Senator Elizabeth Warren (D-Mass.) in introducing the Health and Location Data Protection Act, legislation that bans data brokers from selling some of the most sensitive data available about everyday Americans: their health and location data. The legislation is also cosponsored by Senators Ron Wyden (D-Ore.), Chair of the Senate Finance Committee; Sheldon Whitehouse (D-R.I.); and Bernie Sanders (I-Vt.), Chair of the Senate Budget Committee. The legislation would reign in largely unregulated data brokers, whose data has been used to circumvent the Fourth Amendment, out LGBTQ+ people, stalk and harass individuals, and jeopardize the safety of people who visit abortion clinics for health care.
“As extremist Republican lawmakers work around the clock to criminalize essential health services—including abortion—patients’ private health and location data must be protected,” said Senator Murray. “Selling people’s most sensitive data to turn a profit isn’t just wrong—it’s dangerous, and risks Americans’ safety as they seek the care they need. I’m proud to join my colleagues in introducing the Health and Location Data Protection Act to protect people’s sensitive health data—particularly as Republicans attack all of our reproductive rights.”
“Data brokers profit from the location data of millions of people, posing serious risks to Americans everywhere by selling their most private information,” said Senator Warren. “With this extremist Supreme Court poised to overturn Roe v. Wade and states seeking to criminalize essential health care, it is more crucial than ever for Congress to protect consumers’ sensitive data. The Health and Location Data Protection Act will ban brokers from selling Americans’ location and health data, rein in giant data brokers, and set some long overdue rules of the road for this $200 billion industry.”
“When abortion is illegal, researching reproductive health care online, updating a period-tracking app, or bringing a phone to the doctor’s office all could be used to track and prosecute women across the U.S. It amounts to uterus surveillance. Congress must protect Americans’ privacy from abuse by far-right politicians who want to control women’s bodies. I’m proud to work with Senator Warren to introduce the Health and Location Data Protection Act,” said Senator Wyden.
“Americans ought to feel confident that their highly sensitive data isn’t hocked to the highest bidder without their consent. We need sensible rules for the handling of personal health and location data, especially in light of recent efforts to ban or even criminalize abortion care and other important health care,” said Senator Whitehouse. “I’m pleased to join Sen. Warren in introducing this important bill.”
Data brokers collect and sell intensely personal data from millions of Americans, often without their consent or knowledge, reaping massive profits. Largely unregulated by federal law, the unsavory business practices of data brokers pose real dangers to Americans everywhere.
The Health and Location Data Protection Act would:
The legislation is endorsed by a wide range of data and sexual privacy experts, including experts from Duke University, University of Virginia, and Washington University in St. Louis.
“Health and location data are incredibly sensitive and can be used for a range of harms, from profiling and exploiting consumers to spying on citizens without warrants to carrying out stalking and violence. Companies should not be allowed to freely buy and sell Americans’ health and location data, on the open market, with virtually no restrictions. Imposing strong legal and regulatory controls on this dangerous practice is vital to protecting the privacy of every American—particularly women, the LGBTQIA+ community, people of color, the poor, and other vulnerable communities,” said Justin Sherman, Fellow and Research Lead, Data Brokerage Project, Duke University Sanford School of Public Policy.
“This bill provides crucial protection to the privacy of our intimate lives. Our health and location information should not be sold or shared but rather treated with utmost care. It paints a detailed picture of our close relationships, health conditions, doctor visits, and other aspects of our intimate lives for which we expect and deserve privacy. This bill includes strong and clear rules against the sharing of health and location data and civil penalties and injunctive relief to back them up,” said Danielle Citron, Jefferson Scholars Foundation Schenck Distinguished Professor in Law and Caddell and Chapman Professor of Law, University of Virginia School of Law & Vice President, Cyber Civil Rights Initiative.
“I am happy to endorse Senator Warren’s Health and Location Data Protection Act,” said Neil Richards, Koch Distinguished Professor in Law and Director of the Cordell Institute, Washington University in St. Louis. “For far too long, shadowy networks of data brokers have engaged in an unregulated and unethical trade in our sensitive data for their own profit. This bill would offer significant protections for everyone in our society at a time when the privacy of our health and our location data is becoming ever-more important to our ability to live our lives without fear of betrayal, manipulation, or coercion. The HLDPA would be a significant step in restoring the balance of power between humans and the corporations who trade in their data for profit.”
“By sharing people’s sensitive and personal information, data brokers fuel harmful surveillance and endanger the most vulnerable members of our society. The Health and Location Data Protection Act would finally begin to rein in these invasive business practices, offering people long-overdue protection from this notoriously unregulated and reckless industry,” said Thomas Kadri, Assistant Professor, University of Georgia School of Law.
“This is an important bill that will protect digital privacy, and at an especially sensitive time when location data may be used to track those seeking reproductive health services after the Supreme Court decides the Dobbs case,” said Elizabeth E. Joh, Martin Luther King Jr. Professor of Law, UC Davis School of Law.
“People’s health and location data leaves them remarkably vulnerable. It can reveal the most intimate aspects of their lives and also opens them up to pervasive tracking, harassment, wrongful discrimination, financial loss, and physical injury. Yet data brokers remain free to sell and share this data in ways that lead to harm and abuse,” said Woodrow Hartzog, Professor of Law and Computer Science, Northeastern University. “The Health and Location Data Act of 2022 is a desperately needed intervention that would impose substantive limits on the ability of data brokers to trade on our vulnerabilities. This bill wisely avoids ineffective ‘notice and choice’ approaches and instead draws clear lines prohibiting selling and sharing of our most sensitive data. It would fill one of the largest protection gaps in U.S. privacy law.”
Senator Murray has long been a leader in Congress in the fight to protect and expand access to reproductive health care and abortion rights. Since the Supreme Court agreed to hear Dobbs v. Jackson Women’s Health Organization, Senator Murray has vowed to fight back and protect Roe v. Wade and everyone’s reproductive rights—including by building support and fighting to hold a vote on the Women’s Health Protection Act, which would protect the right to abortion nationwide. Since the leaked decision revealed that the Supreme Court was planning to overturn Roe, Senator Murray has been a leader in the Senate pushing back: immediately calling the decision a “five alarm fire,” pushing for a vote on WHPA so every Republican Senator was forced to show the American public where they stood and leading her colleagues in the fight to protect everyone’s reproductive rights.
Legislative text is available here. A bill summary is available here.