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Can You Hide Your Pregnancy In the Era of Big Data? - The Atlantic

 1 year ago
source link: https://www.theatlantic.com/ideas/archive/2022/10/can-you-hide-your-pregnancy-era-big-data/671692/
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I Tried to Keep My Pregnancy Secret

I did everything I could think of to prevent advertisers and apps from knowing I was expecting. They somehow still found out, and at the worst possible time.

Illustration of a baby in utero made out of zeros and ones
Katie Martin / The Atlantic
October 10, 2022, 7 AM ET

When I became pregnant, my partner and I, like many expectant individuals, opted not to tell our friends until after the first trimester. But I had an additional goal: for my friends to learn of my pregnancy before advertisers did. I’m a health-privacy scholar, so I know that pregnant individuals are of particular interest to retailers because their purchasing habits change during pregnancy and after birth. Companies are eager to send targeted ads and capture a new customer base. In an attempt to avoid this spamming and, frankly, to see if it was possible, I endeavored to hide my private health status from the advertising ecosystem.

My first step was to not directly tell any companies that I was pregnant. I didn’t download “femtech” products that track ovulation, provide cat videos while confirming a pregnancy result, or give updates on a fetus’s growth. With many of these apps, users must agree that their data can be sold. And user agreements are not always foolproof. In one case, the Federal Trade Commission alleged that a femtech company shared consumers’ health details with companies such as Facebook and Google in ways at odds with the user agreement. (The company entered into a settlement agreement without admitting wrongdoing.) I missed out on knowing when my child would be the size of a grape, but I knew my data would be kept private.

I also needed to be wary of ways that companies could piece together my health status. In a famous example reported in The New York Times Magazine, Target identified pregnant shoppers based on purchases for products such as unscented lotion, vitamins, and cotton balls. Data from internet searches, social-media posts, and GPS locations could theoretically tip off a company to a pregnancy. Armed with this knowledge, I took annoying and time-consuming steps to bolster my privacy. I bought prenatal vitamins and pregnancy tests in person with cash, without using rewards or loyalty programs. On the internet, I tried tactics such as using a VPN and non-tracking search engines. I was cautious when going to medical appointments. Knowing the link between location and health status, I turned off my phone’s GPS or left it at home during appointments.

Yet, because of the lack of data privacy in the U.S., the day finally came when I lost my battle to keep my reproductive information private. I was sitting on my couch scrolling through social media when I saw it: an advertisement for diapers. It appeared the same week that we lost the pregnancy.

Like so many individuals and couples who experience miscarriage, stillbirth, or a devastating fetal diagnosis, we had to face tragedy and grief. The very real risk of pregnancy loss is why many choose not to announce their pregnancies until after the first trimester. I, too, chose not to tell others about my pregnancy so that I didn’t have to risk people accidentally asking about children’s names or sending congratulatory cards if—and, it turned out, when—we experienced loss.

Although I could insulate myself from the inadvertent, painful faux pas of a friend or acquaintance, I was not afforded the same ability when it came to advertisers. Seeing advertisements of smiling babies and happy families throughout social media in the days and weeks after the loss made an already unbearable grieving process that much harder—a compounded harm all too familiar for those in similar situations.

Who knows how it happened. Did I forget the VPN one time when searching online? Did that time I used my credit card to buy ginger chews and tea tip them off? I’ll never know. What I do know is that our country’s abysmal privacy framework is failing to protect private reproductive-health information. Instead, the choice to protect one’s privacy in the U.S. is, theoretically, up to the individual. However, given the complexities of user agreements, many individuals are unaware of how their data are being shared. For others, a loss of privacy doesn’t seem like that big of a deal. Their data are the price they are willing to pay for free services, cool apps, or lower-cost goods. Individuals who don’t want to make that trade are told to just not use the product.

But such a simple solution doesn’t address the realities of navigating a health issue in the 21st century. The U.S. Health Insurance Portability and Accountability Act (HIPAA) only protects information within the health-care system. Nowadays, however, we constantly obtain and share medical information outside the clinic. Risking privacy loss may be the sole way to seek answers to important questions, find a community of support, or even make a doctor appointment. And you can’t avoid purchasing medicine and food. Even the slightest bit of protection is available only to those with the means to pay for privacy. Buying a VPN, avoiding free apps, and having cash on hand for purchases are not options accessible to everyone.

Privacy violations are not always benign. Mine came with emotional harm. For others, unwanted disclosure of private medical information comes with risks of discrimination or stigma. Now, because of the Supreme Court’s decision overturning Roe v. Wade, some experts worry that the lack of privacy can create a risk of criminal exposure if companies share amassed reproductive-health information with law enforcement.

Greater protection is sorely needed. Several pieces of legislation have been introduced in Congress that could go a long way toward fully safeguarding reproductive-health information—including data about pregnancy status, pregnancy loss, and abortion. Under HIPAA, we’ve recognized that medical information is worthy of privacy protection. But, in an era of big data, this lofty goal fails.


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