Rep. Sara Jacobs Leads Reintroduction of My Body, My Data Act to Protect Reproductive and Sexual Health Data
Washington, May 17, 2023 | Lauren McIlvaine
As the federal court of appeals hears oral arguments today in a case that could limit access to mifepristone, Congresswoman Sara Jacobs (CA-51) reintroduced the landmark My Body, My Data Act to create a new national standard to protect reproductive and sexual health data. Senators Mazie Hirono (D-HI) and Ron Wyden (D-OR) lead the companion legislation in the Senate.
Since the Supreme Court overturned the constitutional right to an abortion, half of states are expected to ban or severely restrict abortion – putting people who are getting, seeking, or facilitating reproductive care at risk that their digital footprints will be weaponized against them.
Congresswoman Sara Jacobs said: “As Republican-led states and courts are in a frenzy to ban or severely restrict access to abortion care, including mifepristone, it’s never been more urgent to protect our reproductive and sexual health data. Like millions of young people, I use a period tracking app – and the information in these apps along with fertility tracking apps, search history, location data, and so much more can be collected, shared, and sold without our consent, and even used to investigate and prosecute legal cases. That’s why I’m proud to reintroduce the My Body, My Data Act to put power back in people’s hands and ensure that we control our own personal data. My legislation provides the highest level of protection for reproductive and sexual health data – and I urge my colleagues from both sides of the aisle to support and pass it.”
“Along with restricting the reproductive rights of people across the country, the Supreme Court’s disastrous Dobbs decision opened individuals up to the risk of surveillance and prosecution for providing or seeking reproductive care,” said Senator Mazie Hirono. “Everyone should be able to trust that their personal data is safe and secure. This legislation will help protect people’s privacy and ensure their personal health data can’t be used against them. I will continue to do everything in my power to protect the right of all individuals to make decisions about their bodies and their futures.”
“Right now, bans have eliminated all or some access to abortion in 19 states. The ongoing criminalization of essential health care makes protecting our online data critical to protecting our safety and rights,” said Karen Stone, Vice President of Public Policy and Government Relations at Planned Parenthood Federation of America. “Patients must be able to seek essential health care without the fear of their private information being disclosed or misused. We are grateful to Representative Jacobs and Senators Hirono and Wyden for taking on this timely and important issue, and for continuing to champion sexual and reproductive rights.”
Mini Timmaraju, President, NARAL Pro-Choice America, said: “Anti-abortion extremists are doing everything in their power to roll back our fundamental rights, making clear that we must be just as steadfast in our resolve to protect reproductive freedom—including our reproductive health data. We’re grateful to Rep. Jacobs for her leadership during this pivotal moment in our fight, and we look forward to continuing to work by her side to safeguard our freedom to make our own decisions about our lives, bodies, and futures.”
Dr. Jamila Perritt, President & CEO, Physicians for Reproductive Health, said: “Physicians for Reproductive Health endorses the My Body, My Data Act. Every day, people share personal, private information over the internet including information about their reproductive health. Search engines, maps, period tracking apps, and other programs collect information about patients that needs to be safeguarded. This critical legislation would help hold companies accountable and protect individuals’ privacy.”
“Everyone deserves access to abortion care, free from the fear that their private health information could be used to criminalize their choice to exercise reproductive freedom,” said Jocelyn Frye, President, National Partnership for Women & Families, said: “Far too many barriers exist to abortion access, particularly for women of color and those with low incomes. Anxiety about the security of their private health information should not become an additional source of stress. The My Body My Data Act is a tremendous step towards protecting data privacy surrounding abortion care, and we’re grateful to Rep. Jacobs for her leadership on this issue.”
India McKinney, Director of Federal Affairs, Electronic Frontier Foundation, said: “Privacy fears should never stand in the way of healthcare. That's why this common-sense bill will require businesses and non-governmental organizations to act responsibly with personal information concerning reproductive health care. We thank Rep. Jacobs and Senators Hirono and Wyden for taking up this important bill, and using it as an opportunity not only to protect those seeking reproductive health care, but also highlight why data privacy is an important element of reproductive justice.”
Andrew Crawford, Senior Counsel, Center for Democracy & Technology, said: “In the wake of the Supreme Court decision in Dobbs v. Jackson Women’s Health Organization, many states are outlawing abortions and other reproductive health services. Law enforcement in those states will use data collected by companies primarily for commercial purposes to investigate and prosecute people seeking or providing those services. The My Body My Data Act would help protect reproductive rights and activities by expressly limiting overreaching data collecting practices, limiting how long companies can keep personal reproductive or sexual health information, and providing people clear ways to access and delete their health data.”
Caitriona Fitzgerald, Deputy Director, Electronic Privacy Information Center (EPIC), said: “It is past time that Congress enact a strong, comprehensive privacy law. But in the meantime, the mass collection of Americans’ personal health data poses a particularly urgent threat in the wake of the Dobbs decision. Rep. Jacobs’ My Body, My Data Act will limit the collection of Americans’ reproductive health data to what is strictly necessary, protecting the privacy and safety of people seeking reproductive care.”
The My Body, My Data Act is supported by 91 original cosponsors in the House and endorsed by the following organizations: Planned Parenthood Federation of America (PPFA), NARAL Pro-Choice America, Physicians for Reproductive Health (PRH), National Partnership for Women & Families, National Women’s Law Center (NWLC), Electronic Frontier Foundation (EFF), Center for Democracy and Technology (CDT), Electronic Privacy Information Center (EPIC), National Abortion Federation, Catholics for Choice, National Council for Jewish Women, Feminist Majority, Unite for Reproductive & Gender Equity (URGE), and Indivisible.