Inside the systemic attacks on our personal health data

Inside the systemic attacks on our personal health data
Inside the systemic attacks on our personal health data

I’ll never forget where I was on June 24, 2022—the day the Supreme Court struck down the constitutional right to abortion, and I suddenly had fewer constitutional rights than my mother and grandmother. I had just left a meeting of the DCCC’s abortion task force, where my colleagues and I had strategized about how to mobilize voters around abortion rights. We felt energized, motivated and prepared.

Then I got a news alert on my phone: the Dobbs v. Jackson Women’s Health Org the decision was out and Roe v. Wade he had died. I was so angry I was literally shaking. As one of the few women of reproductive age in Congress, I immediately understood what this meant: that millions of people will now be forced to carry unwanted or dangerous pregnancies, and without access to the care they need, people’s lives will be at risk. I also knew that the MAGA Republicans were far from finished with their mission to end all abortions in our country. And today we’re seeing that hold true as the Supreme Court hears a case that could affect even more people than Dobbs answer.

One of the biggest differences between now and beforeRowe era is that there is an entire, unregulated digital marketplace that exists to harvest and profit from our personal information, including our health data.

Today, the Supreme Court begins oral arguments in a case that may limit access to mifepristone— a commonly used abortion pill that is safe, effective, and has been on the market for decades. We don’t know how the Court will rule, but the ruling could prevent mifepristone from being mailed to patients, require multiple in-person visits to a doctor for a prescription, or limit the number of weeks of pregnancy in which it can be used. Medical abortion compensates the majority of all abortions in the US – and more and more people are turning to telehealth to access it, so this decision can be disastrous. Ultimately, this could destroy access to mifepristone 40 million womeneven in blue states like California, which I represent, despite our strong anti-abortion protections.

These coordinated, systematic attacks on abortion access have been decades in the making. But one of the biggest differences between now and beforeRowe era is that there is an entire, unregulated digital marketplace that exists to harvest and profit from our personal information, including our health data. Currently, most state laws target abortion providers or people who assist people seeking an abortion. But it’s only a matter of time before the laws start targeting abortion seekers themselves. We have to admit that our vulnerable user data will be one of the best ways for MAGA Republicans to investigate and prosecute people who want abortions, as well as those who try to help them. And that’s because there are almost no federal protection for reproductive health data in the consumer market. It’s not even HIPAA protected.

The information you leave on cycle and fertility tracking apps, ride-sharing apps, search and browsing history, location data, and more. sold and shared without your consent and at gunpoint by law enforcement. So depending on the Supreme Court’s decision, if you search for mifepristone online, visit a website that provides it, or text about it with a friend — all of that information could be vulnerable and used to enforce anti-abortion laws.

That’s why I introduced the My Body, My Data Act to create a new national standard to protect our reproductive and sexual health data. Under my bill, companies can only collect and store information that is strictly necessary to provide their services. This means that if you use a period or fertility tracking app, a company could not, for example, also store your location data. You’ll also be able to ask companies to delete your data at any time, and they can’t sell or share it. You will also have the power to sue companies if you believe they are misusing your data.

We’ve already seen this personal information weaponized in the postRowe era and knowing the MAGA Republicans, they will only become more savvy and creative in finding new ways to get this information and use it. In 2022, the police used Facebook messages between mother and daughter in Nebraska as evidence of abortion prosecution, which is illegal under state law. Last year, a data broker shared mobile data with an anti-abortion political group that then spread reproductive health misinformation to people who visited 600 abortion clinics in 48 states. And they’re just getting started.

We should not sacrifice connectivity and convenience for fear that our online activity will be used as a weapon against us or used to limit our bodily autonomy.

My bill is necessary to win the next generation of abortion battles, because they will be vastly different from the battles fought by our predecessors. As a 35-year-old millennial, I live much of my life online, as do Gen Z and Gen Alpha. It’s normal to buy groceries online, shop online, chat with family and friends online, and yes, access and research our healthcare options online. We should not sacrifice connectivity and convenience for fear that our online activity will be used as a weapon against us or used to limit our bodily autonomy.

The fight for our abortion rights continues and we must get ahead of it.


Congresswoman Sarah Jacobs represents California’s 51st congressional district and is running for re-election.

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