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US bill to protect reproductive health data is dead. Here's why you should care anyway

My Body, My Data sounds reasonable enough, right?

Legislation recently reintroduced in the US Senate and House of Representatives aims to protect reproductive and sexual health data and prevent it from being monetized – or used to prosecute people in post-Roe America.

To be clear, the proposed My Body, My Data Act doesn't have a snowball's chance in hell of making it to a floor vote in a Republican-controlled House. It probably won't even pass out of committee. But it's still a debate worth having, according to lawmakers and digital privacy advocates who support a national reproductive health data privacy standard.

"Things change," India McKinney, Electronic Frontier Foundation's (EFF) director of federal affairs, told The Register. "Just because the bill is not going to become law this year doesn't mean it won't become law next Congress, if there's a different majority."

(Hands off) My Body, My Data

The My Body, My Data Act of 2023 [PDF] aims to minimize the amount of sexual health data that is collected by non-HIPAA-covered organizations – apps, search engines, mobile devices, and the like – to prevent this information from being disclosed or misused. 

This includes data related to pregnancies or terminations, menstruation dates, contraception, or reproductive health services. And it would limit the personal data that can be collected, retained, used, or disclosed to only what is needed to deliver a product or service.

Newly regulated entities would be required to develop and share a privacy policy with consumers that details how they collect and use reproductive health information, and the Federal Trade Commission would be tasked with enforcing the law.

Additionally, the proposed legislation includes a private right of action so that individuals can sue apps and search engines that are misusing their personal data. And it also includes a non-preemption clause, which means that states can adopt stricter privacy protections if they choose (looking at you, California).

Lawmakers in both the Senate and the House reintroduced the legislation on May 17, the day a federal court of appeals heard oral arguments in a case that could limit access to the abortion pill, mifepristone.

This is the elected officials' second such attempt. The My Body, My Data Act of 2022 died in Senate and House committees last year.

"Right now there is almost no federal protection for this kind of sensitive, personal data," said Representative Sara Jacobs (D-CA).

"That was the case before the Dobbs decision, and we know the stakes have only gotten higher since," she told The Register

When really private data … isn't

Last year the case of Dobbs v. Jackson Women's Health Organization overruled Roe v. Wade and all federal protections to abortion, leaving it up to individual states to make their own laws on the issue. Since the Supreme Court's decision almost a year ago, 20 states have taken actions to ban or restrict abortions, and at least four more are expected to follow suit.

"I'm a 34-year-old woman," Jacobs said. "I use a period tracking app. I have friends and peers who use fertility tracking apps, use Google searches, take Ubers. And after the Dobbs decision I heard from so many people who were panicked and worried about their info falling into the wrong hands."

They were worried for good reason. Fertility apps record a ton of sensitive information: the date of your last period or pregnancy, pregnancy-related symptoms, if a pregnancy ended, or even if you had sex with someone and whether you used contraception.

Search history and location data have also become more problematic post-Roe, with both being used by anti-abortion groups to send targeted ads to people visiting Planned Parenthood clinics or searching for "abortion clinics near me."

This data can be shared or sold and law enforcement can subpoena such private information to prosecute those seeking to end their pregnancies. Sometimes police don't even have to use the courts to compel businesses to hand over this sort of data, because execs surrender it willingly, without a warrant.

This is already having a massive impact. Some states where abortion is now illegal have introduced laws to force prosecutors to target abortion-related offenses. 

Texas is mulling a separate law that would make it a criminal offense for internet service providers to provide access to websites that sell abortion pills or provide information about their use. The Lone Star State already has an abortion bounty law on its the books.

'On the wrong side of the American people'

A Navigator Research survey of US voters found 63 percent of Americans support a law making it illegal for reproductive health apps and search engines to sell or share data to an organization that could be used in a criminal case against women in states where abortion is banned.

Jacobs remains realistic about the bill's chances in Congress.

"Look, I think that the Republicans in Congress are on the wrong side of the American people when it comes to abortion issues," Jacobs said. "With this House of Representatives being run by [Kevin] McCarthy, who has mortgaged his speakership to the far right, it's probably not going to make it up for a vote."

But, she added, "when we regain the majority I think that having it ready to go so we can pass it is important."

And that's exactly what Jacobs and the bill's authors in the Senate – Ron Wyden, (D-OR) and Mazie Hirono (D-HI) – aim to do.

Republicans seem intent on putting the government between women and their personal healthcare choices

"Unfortunately, Republicans seem intent on putting the government between women and their personal healthcare choices," Wyden told The Register. "But that doesn't mean you give up trying." 

"Representative Jacobs, Senator Hirono and I are pulling out all the stops to protect every pregnant person against government threats to their bodily autonomy," he added. "Creating ironclad privacy rules about how reproductive health data is collected, used and shared is essential to ensuring women's electronic devices and records aren't weaponized against them."

In addition to EFF, several other groups have endorsed the My Body, My Data Act.

This includes the Planned Parenthood Federation of America, NARAL Pro-Choice America, Physicians for Reproductive Health, National Partnership for Women and Families, National Women's Law Center, Center for Democracy and Technology, Electronic Privacy Information Center, National Abortion Federation, Catholics for Choice, National Council for Jewish Women, Feminist Majority, Unite for Reproductive and Gender Equity, and Indivisible.

Voters who care about this issue should hold their elected officials accountable – especially those who say they support data privacy, McKinney said. "If you say, 'I support privacy,' cool. Here's a privacy bill. Do you support this? If your Congress member says no, that's useful information," she said.

"It's not going to go anywhere this year, but still, getting people on the record of saying this is something I support or this is something I oppose – that's really useful information for voters," McKinney said. "You have to play the long game when it comes to legislation." ®

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