Can you hide your pregnancy in the age of Big Data?

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When I got pregnant, my partner and I, like many pregnant women, chose not to tell our friends until after the first trimester. But I had an additional goal: that my friends find out about my pregnancy before the advertisers. I am a health and privacy specialist. So I know that pregnant women are of particular interest to retailers, as their shopping habits change during pregnancy and after birth. Businesses are eager to send targeted ads and win new customers. In an attempt to avoid this spam and, frankly, to see if it was possible, I went to great lengths to hide my private health status from the advertising ecosystem.

My first step was not to tell any company directly that I was pregnant. I have not downloaded any “femtech” products that track ovulation, provide chat videos while confirming a pregnancy result, or give updates on the growth of a fetus. With many of these apps, users have to accept that their data can be sold. And user agreements aren’t always foolproof. In one case, the Federal Trade Commission alleged that a femtech company shared consumer health details with companies such as Facebook and Google in a manner contrary to the user agreement. (The company reached a settlement without admitting wrongdoing.) I missed knowing when my child would be the size of a grape, but I knew my data would be kept private.

I also had to be wary of the ways companies could replenish my health. In a famous example reported in The New York Times magazine, Target identified pregnant customers based on their purchases of products such as unscented lotions, vitamins and cotton balls. Data from internet searches, social media posts, and GPS locations could theoretically tell a company a pregnancy. Armed with this knowledge, I took tedious and time-consuming steps to strengthen my privacy. I purchased 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 no-tracking search engines. I was careful when going to medical appointments. Knowing the connection between location and health, I turned off my phone’s GPS or left it at home during appointments.

Yet, due to the lack of data privacy in the United States, the day finally came when I lost my battle to keep my reproductive information private. I was sitting on my couch browsing social media when I saw this: an ad for diapers. It appeared the same week that we lost the pregnancy.

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

Although I could insulate myself from the involuntary and painful misstep of a friend or acquaintance, I did not have the same capacity when it came to advertisers. Seeing advertisements of smiling babies and happy families on social media in the days and weeks following the loss made an already unbearable grieving process even more difficult – an aggravated ailment all too familiar to those who find themselves in situations similar.

Who knows how it happened. Did I forget the VPN once while searching online? Did that time I used my credit card to buy ginger gum and tea, did he notify them? I would never know. What I do know is that our country’s abysmal privacy framework does not protect private reproductive health information. Instead, the choice to protect one’s privacy in the United States rests, in theory, with the individual. However, given the complexity of user agreements, many people are unaware of how their data is shared. For others, a loss of privacy doesn’t seem so bad. Their data is the price they’re willing to pay for free services, cool apps, or lower-cost goods. People who don’t want to do this business are told not to use the product.

But such a simple solution doesn’t address the realities of navigating a health issue in the 21st century. The US Health Insurance Portability and Accountability Act (HIPAA) only protects information within the healthcare system. These days, however, we are constantly obtaining and sharing medical information outside of the clinic. Risking your privacy may be the only way to seek answers to important questions, find a supportive community, or even make a doctor’s appointment. And you can’t avoid buying medicine and food. Even the slightest protection is only available to those who can afford to pay for privacy. Buying a VPN, avoiding free apps, and having cash on hand for purchases aren’t options available to everyone.

Privacy breaches are not always benign. Mine came with emotional harm. For others, the unwanted disclosure of private medical information is accompanied by risks of discrimination or stigmatization. Today, due to the Supreme Court ruling overturning Roe vs. Wadesome experts worry that the lack of confidentiality could create a risk of criminal exposure if companies share amassed reproductive health information with law enforcement.

Greater protection is absolutely necessary. Several pieces of legislation have been introduced in Congress that could go a long way toward fully protecting reproductive health information, including pregnancy status, pregnancy loss, and abortion data. Under HIPAA, we have recognized that medical information is worth protecting. But, in the age of big data, this noble goal fails.

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