The Trade-Offs for Privacy in a Post-Dobbs Era

Michele Gomez remembers the exact moment when she realized the problem. It was the fall of 2022. Gomez (who, like me, is a family physician and abortion provider in California) had recently provided a virtual medication abortion to a patient from Texas. The patient had flown to her mom’s house in California, where she had her appointment, took her mail-order medications, and passed the pregnancy. Back in Texas, she became concerned about some ongoing bleeding and went to the emergency room. The bleeding was self-limited; she required no significant medical interventions. Gomez learned all this the following morning. “I sat down at my computer and saw her note from the ER. And I thought, ‘Oh God, if I can see their note, then they must be able to see my note”—a note that included prescriptions and instructions for the medication abortion. For weeks afterward, she waited for a call, fearing Texas law enforcement would come after her—or worse, after her patient.

A vast system of digital networks—called Health Information Exchanges, or HIEs—link patient data across thousands of health care providers around the country. With the click of a mouse, any doctor can access a patient’s records from any other hospital or clinic where that patient has received care, as long as both offices are connected to the same HIE.  In a country with no national health system and hundreds of different electronic medical record (EMR) platforms, the HIE undeniably promotes efficient, coordinated, high-quality medical care. But such interconnectivity comes with a major trade-off: privacy. 

Patient privacy has always been a paramount value in abortion care, and the stakes have only gotten higher after the Dobbs decision. I am among many concerned abortion providers asking for swift action from EMR companies, who have the power to build technical solutions to protect our patients’ digital health information. If these companies aren’t willing to build such protections, then the law should force them to do so.

Although it’s not spelled out in the Constitution, the Supreme Court has historically interpreted several amendments to imply a “right to privacy,” most famously in the case of Roe v. Wade. By grounding the Roe decision in the 14th amendment’s Due Process clause, the Supreme Court effectively wrapped a right to privacy around the female body and its capacity for pregnancy. 

Over the 50 years following Roe, the internet came along, and then the electronic medical record and the HIE. Alongside this growing connectivity and portability, the federal government enacted a series of laws to protect health information, including the Privacy Act of 1974 and parts of the Health Information Portability and Accountability Act (HIPAA) of 1996. But HIPAA is not primarily a privacy law; its main purpose is to facilitate the transfer of health records for medical and billing purposes. Many patients don’t realize that under HIPAA, doctors are permitted (though not always required) to share health information with other entities, including insurance companies, health authorities, and law enforcement. 

HIPAA does include some privacy provisions to protect “sensitive” information. Certain substance use treatment records, for example, are visible only to designated providers. Law enforcement is prohibited from accessing those records without a court order or written consent. Access to abortion records can be similarly restricted, but with a technical catch: These restrictions apply only to certain data, called “visit-specific” information, such as the text of the doctor’s note. Other data, called “patient-level” information—including ultrasound images, consent forms, and medications—remain discoverable. If, for example, a patient travels to California and is prescribed mifepristone and misoprostol—the standard regimen for medication abortion—those medications will appear in her record back in her home state. Any reasonable person can assume what happened at that visit, even without reading the note.