After the Supreme Court overturned Roe v. Wade, many people have deleted period tracking apps from their phones to protect their privacy. They’re right to be paranoid: Your “data body” — meaning the digital traces of our lives — can be (and has been) used by investigators to track if people are pregnant.
But just deleting your period tracking app won’t protect your privacy.
If you have health insurance from your employer, if you have ever had an electronic health record created for you in an emergency room or at your doctor’s office, if you have a debit or credit card, or car insurance, or if you shop in a grocery store, your health data have already been collected, shared multiple times, and sold.
I learned this the hard way, after my baby died.
Several years ago, I was newly pregnant, and the data tracking became evident right away, when I began receiving free samples of baby formula, parenting magazines, diapers, and other baby things sent directly to me at my home address. Even after I miscarried, the stream of marketing was relentless; somehow Big Data knew I was pregnant at week six but didn’t get the message that I miscarried in week ten.
For the data brokers and marketers who had access to my health data, I experienced an uncomplicated pregnancy and had given birth at full term to a healthy baby. And for five years, I watched as my “baby” grew and thrived through toddlerhood and was getting ready to enroll in preschool, all through the direct marketing — offers for child life insurance or coupons for baby clothes sent directly to me through the mail, emails and online ads for educational software for preschoolers — that I received almost weekly.
While I was mourning the loss of my pregnancy, I was tormented by a sense that I had no privacy or autonomy over data about one of the most intimate and painful experiences of my life. I began to feel that while my baby died, my data baby lived on in marketing databases across the country, and their body would be reassembled time and again to haunt my doorstep or computer, to demand that I buy it things. This experience was deeply traumatizing.
“I began to feel that while my baby died, my data baby lived on in marketing databases across the country.”
By accessing health information that I unwittingly shared through credit card swipes at my doctor’s office when I made a co-payment, or at the pharmacy where I purchased pregnancy tests or fertility drugs, or through GPS coordinates showing my cell phone was in the fertility clinic, data brokers and other Big Data companies captured my data to infer that I was pregnant. Through business-to-business agreements, credit bureaus purchase transactional data from millions of credit and debit card transactions. Pharmacies also sell prescription data, stripped of patient information but not of the doctor who prescribed the drugs, to data brokers such as Experian, which claims to own data on 98% of American households in their databases of consumer information. Data brokers combined these transactional and prescription data from my consumer and health care purchases with perhaps thousands of other data points that they held about me in their databases and sold my data profile that indicated that I was “pregnant” to marketers or to anyone with the money to purchase my information. This data sharing was perfectly legal and goes on as standard industry practice.
Anonymous strangers can figure out you are pregnant right away, and these data can be used to determine if you’ve tried to get an abortion. The implications of this are chilling.
Without the federal protections of Roe v. Wade, up to 26 states could make obtaining an abortion a crime, and could use internet searches in those states as evidence of a pregnant person’s conspiracy to commit a crime — the crime of making a personal and private health decision — by ordering abortion pills, consulting a telemedicine abortion provider, or searching for flights to visit an abortion clinic in a neighboring state. State governments can purchase this information from data brokers without a warrant.
» READ MORE: Google to erase more location info as abortion bans expand
Now, more than any time in the last 50 years, human and privacy rights, and the autonomy of both, are imperiled. But your data body never really had a right to privacy or autonomy to begin with.
The laws that shield the data body from intrusions on its privacy or autonomy are virtually non-existent. The Health Insurance Portability and Accountability Act, or HIPAA, secures the privacy of a patient’s information, but does not provide data privacy protections to personal information that is produced or captured outside of clinical settings. That includes a lot of what could be understood as “health data.” For instance, any purchases of at-home pregnancy tests using a debit or credit card are not covered by HIPAA. There are gaping holes in the various laws for our health data to slip through.
Five states — California, Virginia, Utah, Colorado, and Connecticut — have recently passed legislation that recognizes the privacy and bodily autonomy rights of data bodies. But we need something at the federal level — especially now, when our reproductive rights are in jeopardy.
This is important for every aspect of our lives and health, but particularly in pregnancy. No anonymous company should know if we are pregnant, and be able to track our progress, or alert authorities if we miscarry or seek an abortion. Pregnancy is an intense, emotional time for most people. It deserves to be respected — and kept private.
Mary FE Ebeling is a professor and sociologist at Drexel University. She is the author of Afterlives of Data: Life and Debt under Capitalist Surveillance by University of California Press.