But with every search, Jones was surreptitiously tracked — by phone apps and browsers that track us as we click, capturing even our most sensitive health data.
Online searches. Vintage apps. Fitness trackers. Advice helplines. GPS. The often obscure companies that collect our medical history and geolocation data may know more about us than we know ourselves.
At the moment, the information is mainly used to sell us things, like baby products for pregnant women. But in a post-Roe world – if the Supreme Court overturns the 1973 decision that legalized abortion, as a draft opinion suggests, it could be in the coming weeks – data would become more valuable and more vulnerable women.
Privacy experts fear pregnancies could be monitored and data shared with police or sold to vigilantes.
“The value of these tools for law enforcement is how much they can really peek into the soul,” said Cynthia Conti-Cook, a lawyer and technology researcher at the Ford Foundation. “It gives them the mental chatter in our heads.”
HIPAA, HOTLINES, HEALTH STORIES
The digital trail only becomes clearer when we leave the house, as location apps, security cameras, license plate readers and facial recognition software track our movements. The development of these technological tools has far outstripped the laws and regulations that could govern them.
And it’s not just women who should be affected. The same tactics used to monitor pregnancies can be used by life insurance companies to set premiums, banks to approve loans and employers to weigh hiring decisions, experts said.
Or he could – and sometimes does – send women who suffer miscarriages cheerful advertisements on the birthday of their future child.
This is all possible because HIPAA, the Health Insurance Portability and Accountability Act of 1996, protects medical records at your doctor’s office, but not the information that third-party apps and tech companies collect about you. HIPAA also does not cover medical histories collected by non-medical “crisis pregnancy centers,” which are run by anti-abortion groups. This means the information can be shared or sold to almost anyone.
Jones contacted one of these facilities early in his Google search, only to discover that they did not offer abortions.
“The dangers of unrestricted access to Americans’ personal data have never been clearer. Searching for birth control online, updating a period tracker app, or bringing a phone to the doctor’s office could be used to track and prosecute women across the United States,” said Sen. Ron Wyden, D-Ore., last week.
For a myriad of reasons, both political and philosophical, US data privacy laws lag far behind those passed in Europe in 2018.
Until this month, anyone could buy a weekly trove of customer data at more than 600 Planned Parenthood locations across the country for as little as $160, according to a recent Vice survey that conducted a data broker to remove the family planning clinics from the customer “model” data it sells. The files included patients’ approximate addresses (up to the census block, derived from where their cell phones “slept” at night), income brackets, time spent at the clinic, and the main places people stopped before and after their visits.
Although the data does not identify patients by name, experts say it can often be pieced together, or anonymized, with a little research.
In Arkansas, a new law will require women seeking an abortion to first call a state hotline and inquire about alternatives to abortion. The hotline, which is expected to debut next year, will cost the state nearly $5 million a year to operate. Critics fear this is another way to track pregnant women, either by name or ID number. Other states are considering similar legislation.
Widespread surveillance capabilities alarm privacy experts who fear what will happen if Roe v. Wade is knocked down. The Supreme Court is expected to deliver its opinion in early July.
“A lot of people, where abortion is criminalized — because they have nowhere to go — are going to go online, and every step they take (could) … be monitored,” Conti-Cook said.
PUNISH WOMEN, DOCTORS OR FRIENDS?
Women of color like Jones, as well as poor and immigrant women, could face the most severe consequences if Roe falls, as they generally have less power and money to cover their tracks. They also tend to have more abortions, proportionally, perhaps because they have less access to health care, birth control and, in conservative states, schools with good sex education programs.
The leaked draft suggests the Supreme Court may be willing to let states ban or severely restrict abortion through civil or criminal penalties. More than half are about to do so. Abortion haters have widely promised not to punish the women themselves, but rather to target their providers or the people who help them access services.
“The penalties are for the doctor, not the woman,” Republican State Rep. Jim Olsen of Oklahoma said last month of a new law that makes abortion a felony, punishable by death. 10 years in prison.
But abortion advocates say that remains to be seen.
“When abortion is criminalized, pregnancy outcomes are investigated,” said Tara Murtha, communications director for the Women’s Law Project in Philadelphia, who recently co-authored a report on digital surveillance in the field of abortion.
She wonders where the exam would end. Prosecutors have previously targeted women who use drugs during pregnancy, an issue Justice Clarence Thomas raised during Supreme Court oral arguments in the case in December.
“Any adverse pregnancy outcome can turn the person who was pregnant into a suspect,” Murtha said.
STATE LIMITS, TECHNICAL STEPS, PERSONAL ADVICE
A few states are starting to push back, setting limits on tech tools as the fight for consumer privacy escalates.
Massachusetts Attorney General Maura Healey, through a court settlement, stopped a Boston-based advertising company from showing anti-abortion ads on smartphones to women inside clinics that offer abortion services. abortion, seeing it as harassment. The firm had even offered to use the same “geofencing” tactics to send anti-abortion messages to high school students.
In Michigan, voters amended the state constitution to ban police from searching someone’s data without a warrant. And in California, home to Silicon Valley, voters have passed a sweeping digital privacy law that allows people to see their data profiles and request their removal. The law came into force in 2020.
Concerns are growing and have forced Apple, Google and other tech giants to start taking steps to curb the sale of consumer data. This includes Apple’s launch last year of its App Tracking Transparency feature, which allows iPhone and iPad users to block apps from tracking them.
Abortion rights activists, meanwhile, suggest women in conservative states leave their cellphones, smartwatches and other wearable devices at home when seeking reproductive health care, or at least turn off the location services. They should also look closely at the privacy policies of the period trackers and other health apps they use.
“There are things people can do that can help mitigate their risk. Most people won’t do them because they don’t know or it’s not practical,” said Nathan Freed Wessler, deputy director of the ACLU’s Speech, Privacy, and Technology Project. “There are very, very few people who have the know-how to do everything.”
Digital privacy was the last thing Jones was thinking about when she found herself pregnant. She was in crisis. She and her partner had ambitious career goals. After several days of searching, she found an appointment for an abortion in neighboring Delaware. Luckily he had a car.
“When I was going through this, it was just survival mode,” said Jones, who took part in a march in downtown Baltimore on Saturday in support of abortion rights.
Plus, she says, she grew up in the age of the internet, a world in which “all my information is sold all the time.”
But news of the leaked Supreme Court bill sparked discussions at his law school this month about privacy, including digital privacy in the age of big data.
“Literally, because I have my cell phone in my pocket, if I go to a CVS, they know I went to a CVS,” the future attorney said. “I think the right to privacy is such a deeper issue in America (and one) that’s being violated all the time.”
This story corrects the title of U.S. Senator Ron Wyden, who is a senator and not a representative.
Follow Maryclaire Dale on Twitter at https://twitter.com/Maryclairedale