Congresswoman Jacobs Announces My Body, My Data Act to Protect Reproductive Health Data
Leaked Supreme Court draft decision raises concerns data could be used to target people if abortion is criminalized
Washington, D.C. - Today, Congresswoman Sara Jacobs (D-CA-53) announced the My Body, My Data Act, legislation to protect personal reproductive health data. The bill would create a new national standard to protect personal reproductive health data, enforced by the Federal Trade Commission. By minimizing the personal reproductive health data that is collected and retained, the bill would prevent this information from being disclosed or misused.
Jacobs’ legislation was highlighted today in the Washington Post. The bill is being finalized and will be formally introduced when the House is back in session.
The leaked draft decision revealing the Supreme Court’s plans to overturn Roe v. Wade has raised serious concerns that data collected by apps and websites could be used to target or arrest people if abortion is criminalized. This includes location data, search histories, and reproductive health data collected by menstruation, ovulation, and pregnancy tracking apps each month. Recent reporting has also revealed the prevalence with which consumers’ personal reproductive health information – often our most personal information – is disclosed and monetized.
Currently, few protections exist to prevent personal reproductive health data or information about people seeking reproductive health services from being collected, retained, or disclosed to third parties. With at least 26 states likely or certain to ban abortions if Roe is overturned, this bill is the first Congressional action to strengthen digital privacy and protect our personal reproductive health information specifically.
“Since the Supreme Court leak, I’ve heard from so many people who are panicked about their personal reproductive health data falling into the wrong hands. The My Body, My Data Act will protect that information, protect our privacy, and reaffirm our rights to make our own decisions about our bodies,” said Congresswoman Jacobs. “As a young woman, reproductive health care is my health care. And like tens of millions of Americans, I’ve used period tracking apps to help manage my reproductive health. It’s unconscionable that information could be turned over to the government or sold to the highest bidder and weaponized against us, and especially against low-income people and people of color who will be most impacted if Roe is overturned.”
The My Body, My Data Act would:
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Limit the personal reproductive and sexual health data that can be collected, retained, used, or disclosed to only what is needed to deliver a product or service.
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Protect personal data collected by entities not currently covered under HIPAA, including data collected by apps, cell phones, and search engines.
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Require regulated entities to develop and share a privacy policy outlining how they collect, retain, use, and disclose personal reproductive health information.
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Direct the Federal Trade Commission (FTC) to enforce the law and to develop rules to implement the statute.
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Create a private right of action to allow individuals to hold regulated entities accountable for violations.
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Provide additional consumer protections, including the right of an individual to access or delete their personal data if they choose to.
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Include a non-preemption clause that allows states to provide further protection for reproductive and sexual health privacy
“Planned Parenthood Federation of America is grateful to Rep. Sara Jacobs for leading the introduction of the My Body, My Data Act, and working to address the abortion access crisis facing our nation,” said Karen Stone, Vice President of Public Policy and Government Relations at Planned Parenthood Federation of America. “Everyone should have the ability to access the abortion care they need without additional fears or concerns about the protection of their personal reproductive health data. Planned Parenthood is dedicated to working with lawmakers at all levels because everyone has a part to play in protecting and strengthening abortion access.”
“We’re grateful for Rep. Jacobs’ leadership at a time when the constitutional right to abortion is on the line like never before,” said Mini Timmaraju, President of NARAL Pro-Choice America. “As our fundamental right to make our own decisions about whether to start or grow a family faces unprecedented threats, we look forward to working with Rep. Jacobs to protect and advance reproductive freedom.”
“The privacy of our reproductive health data is under growing attack,” said India McKinney, Director of Federal Affairs of Electronic Frontier Foundation. “We thank Rep. Jacobs for proposing strong new statutory safeguards for our private data, and we look forward to working with her to enact them.”
”Young people live more of their lives in the digital world than ever before, opening them up to increased surveillance of their reproductive health information,” Desireé Luckey, Director of Policy at URGE: Unite for Reproductive & Gender Equity. “URGE supports the 'My Body, My Data Act' to encourage data minimization and decrease the chance that their personal information will be shared in ways that threaten their privacy and well-being now, and in the future.”
“Modern technology can be a critical tool to help empower patients and enable them to secure access to quality health care,” said Jocelyn Frye, President, National Partnership for Women & Families. “But legislative abortion bans can lead to the misuse of technology and endanger pregnant people and abortion providers. The National Partnership is grateful to Rep. Jacobs for working to protect the health information of people seeking abortions so that they can access care safely and without fear of criminal punishment.”
Jacobs has been a longtime champion of reproductive health care and reproductive freedom. In September 2021, Jacobs shared her personal experience freezing her eggs and her efforts to expand fertility and reproductive health care as a Member of Congress. She is an original co-sponsor of the Women’s Health Protection Act, which would codify Roe v. Wade and which the House of Representatives passed last year. She is also a co-sponsor of the Access to Infertility Treatment and Care Act, legislation to expand insurance coverage for the full range of reproductive and fertility health care.
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