Epidemiology

Following Dobbs, PRESTO Pregnancy Planners Reduced Engagement with Fertility App

A new study found that participants in the BU-based preconception cohort study who lived in states where abortion was banned or severely restricted were less likely to share personal health information in a fertility tracking app, suggesting that concerns and confusion persist around the potential legal consequences of sharing reproductive health information in a post-Roe era.

The US Supreme Court’s decision to end the federal right to abortion has had a devastating impact on reproductive rights and health equity, with consequences that reach far beyond abortion care. In addition to threatening access to fertility treatment, contraception, and critical care for pregnancy-related complications, states’ continued efforts to penalize and criminalize abortion and other reproductive care—coupled with unclear or varied interpretations of related legislation—has raised concern around data privacy rights and potential oversight from law enforcement on personal healthcare data stored in fertility tracking apps, texts, electronic health records, and other digital platforms.

These concerns appear to be affecting participation in reproductive health research, according to a new study led by researchers for Pregnancy Study Online (PRESTO) at the School of Public Health. The web-based preconception cohort study tracks lifestyle, environmental, and medical factors that may affect fertility and pregnancy outcomes among thousands of individuals ages 21-45 who are trying to conceive. 

Published in the journal Paediatric and Perinatal Epidemiology, the study examined the extent to which the 2022 Dobbs v. Jackson Women’s Health Organization ruling influenced PRESTO participants’ engagement with an optional fertility tracking app that they are invited to use when they enroll in the study.

The researchers observed little change in app engagement among pregnancy planners’ who live in US states with limited or protected abortion rights. But in states with banned or restricted abortion rights, there was a 27-percentage-point reduction in the number of participants who clicked on the study’s invitation link for the app, compared to pre-Dobbs periods.

The findings raise concern about the accuracy and quality of future reproductive health research if participants become hesitant to provide important information about their pregnancy planning process.

“The context of abortion rights is changing so fast from state to state and there is a lot of confusion about what the laws actually mean in different states,” says study lead and corresponding author Mary Willis, assistant professor of epidemiology. 

While restrictive abortion laws are not explicitly intended to target PRESTO participants—i.e. people who are actively trying to become pregnant—unexpected pregnancy complications could potentially place pregnant people in legal peril based on the care they seek. “We were wondering if people would be less willing to participate in our study in case they had complications such as a pregnancy loss and would then be hesitant to report this loss for fear of potential legal action if they did not continue with the pregnancy,” she says. 

For the study, Willis and colleagues from SPH and Boston College School of Social Work (BCSSW) utilized PRESTO survey data from more than 2,800 participants, spanning 20 weeks before and after the Dobbs decision (February 2022 to November 2022). Participant engagement was defined as responses to a follow-up questionnaire, reports of pregnancies, and clicking on an invitation link for a fertility tracking app. The researchers examined state laws to determine which participants were living in states that were “likely most affected,” “potentially impacted,” and “likely least affected” by the overturning of Roe v. Wade.

Currently, 14 states almost completely ban abortion, and another 27 states limit abortion based on varying gestational age, from six weeks to more than 24 weeks. Abortion advocates won a victory when the Supreme Court recently upheld access to mifepristone, an abortion medication that is also used in miscarriage care, but the drug’s legality remains uncertain as anti-abortion supporters continue to fight its access in court. 

It is critical to continue assessing how these legal battles affect data collection and health research moving forward, Willis says.

“One of the main questions that remain is, will we be able to do app-based fertility research in the future?”

The study’s senior author was Lauren Wise, professor of epidemiology and principal investigator of PRESTO. At SPH, the study was coauthored by PRESTO researchers, including Molly Hoffman, doctoral student; Tanran Wang, senior data analyst; Amelia Wesselink, research assistant professor of epidemiology; and Andrea Kuriyama, research assistant. Erika Sabbath, associate professor of older adults & families and health & mental health at BCSSW, was also a coauthor.