How Women’s Health Data Got Weaponized
How Women’s Health Data Got Weaponized
A report from the post-Roe digital landscape.
In the newsletter and on Season Two of the podcast, I’ve been talking a lot about protecting our data. Well, some of our most sensitive data pertains to our health. And in today’s politically charged environment, this is even more important and worrisome — especially when it comes to women’s reproductive health data.
In Episode 4 of the podcast, which dropped last week, I spoke with Sue Dunlap, who runs Planned Parenthood in Los Angeles. She told me heartbreaking stories of women who are deferring critical health care treatments because they don't want a record of their pregnancy in the medical system, regardless of the state in which they received care. For women who go to great lengths to hide their pregnancy — like Janet Vertesi, the sociology professor I mention at the beginning of the episode, who used cash or gift cards to pay for all of her baby items — they set off a bunch of alarms, because the act of hiding her pregnancy was deemed suspicious.
This all seems deeply unfair, so I want to stay on the optimistic side and spend a few minutes talking about California Congressman Ted Lieu's bill, the Reproductive Data Privacy and Protection Act (which we also cover on the podcast, including an interview with Lieu). The bill responds to concerns that anti-abortion groups or law enforcement could exploit personal data from sources like location tracking, internet searches and health apps to monitor and target those involved in obtaining or facilitating abortions across state lines. It aims to protect the privacy of individuals' data related to reproductive and sexual health services like abortion, IVF, contraceptive use, period tracking apps and pregnancy-related information.
As Change Research found in a recent poll of American women, 51% agreed that in the next five years, it is likely that technology companies will be required to turn over data in investigations of illegal abortion activity. But that reality is now.
The bill, which Lieu and four colleagues introduced in March, would ensure that any data obtained by law enforcement does not involve or pertain to the criminalization of such reproductive health services. This is intended to prevent the potential misuse of digital data and surveillance to track or prosecute women seeking abortions or other reproductive care, especially in states where such services are restricted or banned after the overturning of Roe v. Wade almost two years ago.
Reproductive data could be a harbinger of all our data being used against us.
Of course, a better thing to do is to pass real federal data legislation, but getting this bill passed seems like a critical interim step. That’s because reproductive data could be a harbinger of all our data being used against us. Without protection, our location tracking, search history, text messages and email, health data…everything has the power to be weaponized by law enforcement or the companies to whom our data is sold or turned over. Our lives are so digitized at this point that we don’t even think about the data that we shed — or the potential consequences. But for those women who have been prosecuted based on something as seemingly innocent as a period tracker app, we need all the protection you can get.
I hope that you’ll listen to the episode, which provides a chilling sense of how data is affecting women’s reproductive rights — and what’s being done to fight back.
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