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Senators Introduce Bill To Protect Reproductive Health Data: ‘My Body, My Data’


Anti-abortion governments and private entities are already using cutting-edge digital technologies to surveil women’s search history, location data, messages, online purchases and social media activities. (Ivan Radic / Flickr)

The digital surveillance threats to women’s reproductive health information are likely to escalate dramatically if the Supreme Court repeals abortion rights in the coming days and states criminalize abortion. In response, U.S. Senators Mazie K. Hirono (D-Hawaii), Ron Wyden (D-Ore.) and Representative Sara Jacobs (D-Calif.) introduced the My Body, My Data Acta federal law protecting personal reproductive health data by minimizing the information that companies can collect and retain, for example through period tracking apps. The bill would prevent organizations from disclosing or misusing that information and create a new national standard to protect reproductive health data, enforced by the Federal Trade Commission.

“Extreme Republicans across the country aren’t only trying to take away women’s constitutional rights, they want to actually put people in jail for providing or seeking reproductive care,” said Hirono. “This legislation will take steps to protect women’s privacy and ensure that individuals cannot collect data from websites or apps and use it against them.” 

New York-based privacy group Surveillance Technology Oversight Project (S.T.O.P.) released a chilling report last month explaining how anti-abortion governments and private entities are already using cutting-edge digital technologies to surveil women’s search history, location data, messages, online purchases and social media activities by using geofencing, keyword warrants, big data and more. Modern surveillance tools will help states to enforce criminal abortion bans on a scale that was technically impossible before Roe, posing an unprecedented threat to pregnant women and those helping them access care.

“As it stands, anti-abortion activists already surveil pregnant people to intimidate them out of exercising their legal reproductive rights. Police and prosecutors already surveil pregnant people digitally to pursue cases against them,” said S.T.O.P.’s research director Eleni Manis. “If the Supreme Court overturns Roe, we expect a massive escalation of surveillance targeting pregnant people, their reproductive healthcare providers and anyone helping pregnant people access care, including care for miscarriages and ectopic pregnancies.”

The S.T.O.P. report explains how police can use digital keyword warrants to “cast digital dragnets” and identify people seeking abortion information online. They can also purchase data from commercial data brokers—which they can do without any court oversight—and leverage commercial databases that use big data and machine learning to predictively identify pregnant women. Using these technologies, police can track anyone who travels out of state for abortion healthcare and prosecute them upon their return.

Anti-abortion “crisis pregnancy centers” already use sophisticated digital strategies to collect and share information about people visiting their centers or websites.

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. The My Body, My Data Act would change that by:

  • limiting collection of 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;
  • protecting personal data collected by entities not currently covered under HIPAA, including data collected by apps, cell phones and search engines;
  • requiring regulated entities to develop and share a privacy policy outlining how they collect, retain, use and disclose personal reproductive health information;
  • creating a private right of action to allow individuals to hold regulated entities accountable for violations;
  • providing additional consumer protections, including the right to access or delete personal data; and
  • allowing states to provide further protection for reproductive and sexual health privacy.

The bill is supported by a wide range of advocacy organizations, including Planned Parenthood Federation of America, NARAL Pro-Choice America, Electronic Frontier Foundation (EFF), National Partnership for Women & Families, the National Abortion Federation, Unite for Reproductive & Gender Equity, and Feminist Majority.

“Privacy fears should never stand in the way of healthcare,” said EFF’s senior legislative activist Hayley Tsukayama and EFF’s director of federal affairs India McKinney. “That’s why this common-sense bill will require businesses and non-governmental organizations to act responsibly with personal information concerning reproductive healthcare.”

Sign and share Ms.’s relaunched “We Have Had Abortions” petition—whether you yourself have had an abortion, or simply stand in solidarity with those who have—to let the Supreme Court, Congress and the White House know: We will not give up the right to safe, legal, accessible abortion.

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