Rep. Lisa Subeck (D-Madison) is proposing that Wisconsin require crisis pregnancy centers to get express written permission before releasing a person’s private health information. (Photo by Baylor Spears/Wisconsin Examiner)

Rep. Lisa Subeck (D-Madison) is proposing that Wisconsin require crisis pregnancy centers to get express written permission before releasing a person’s private health information. Those who have given permission would also be able to withdraw their permission at any time under the bill. 

“Many people assume that when they seek care for pregnancy or other reproductive health services that that information is protected, just like any other medical records under HIPAA, and while that is true at your doctor’s office or at the hospital, it’s not always true when you visit other providers,” Subeck said at a press conference Thursday.

Concerns about information being gathered about women’s reproductive health, including by crisis pregnancy centers, have surged in the years since Roe v. Wade was overturned by the U.S. Supreme Court, especially in states where abortion has been criminalized. 

A 2022 TIME Magazine report found that crisis pregnancy centers have been collecting information including sexual and reproductive histories, test results, ultrasound photos, and information shared during consultations, parenting classes, or counseling sessions, from women they interact with through telephone and online chats. They are not required to follow federal health data privacy laws. The report led to U.S. Sen. Elizabeth Warren requesting an examination of the practices by crisis pregnancy centers.

The bill, coauthored by Sen. LaTonya Johnson (D-Milwaukee), would also require centers to disclose in “plain language” that they are not a HIPAA-covered entity for the purpose of federal privacy regulations as well as disclosing any data breach that exposes individual digital health information.

Subeck said the centers can “look and feel an awful lot like a traditional medical clinic,” noting that they might offer ultrasounds, pregnancy tests and claim to have counselors on staff. However, she said “many of these centers are not licensed medical providers, and therefore they are not covered by HIPAA privacy protections.”

Subeck said that changes in reproductive health laws have raised concerns about the misuse of health related information and data. She said the bill would not close unregulated pregnancy centers, limit the services they can provide or limit speech. Rather, she said, it “simply sets some basic privacy expectations and protections for unsuspecting individuals.”

Subeck noted that lawmakers in other states, including Pennsylvania, have introduced similar measures, though none have become law.

Subeck said the violations of the provisions in the bill would be treated as “unfair and deceptive practices” under existing state law.

Laura Hanks, an OB-GYN and legislative chair for American College of Obstetricians and Gynecologists, said at the press conference that the bill shouldn’t be political.

“It’s about privacy, honesty and safe, medically accurate care. Unregulated pregnancy centers often look like clinics, but they aren’t held to the basic medical privacy rules,” Hanks said. “This means they lack regulation, medical oversight or standard confidentiality rules. Too many people are walking in and assuming their health care information is protected when it isn’t. This bill sets commonsense guardrails.”