A new commentary in Reproductive Health calls for fetal condition care to be reframed through a Reproductive Justice (RJ) lens, arguing that systemic inequities, not just medical factors, shape the options available to families. A team of researchers, led by Penn Nursing and SisterSong the Women of Color Reproductive Justice Network, authored the editorial which highlights how structural power—rather than just medical necessity—shapes the experiences of families navigating complex fetal diagnoses.
In the US, a baby is born with a congenital anomaly every four and a half minutes. While these diagnoses lead to life-altering decisions, access to care remains profoundly unequal. Lead author Abigail B. Wilpers, PhD, RN, Assistant Professor, Research Track in the Department of Family and Community Health , emphasizes the need to move beyond a narrow clinical focus.
"Reframing fetal conditions as a Reproductive Justice issue is essential to addressing these inequities," said Wilpers. "This lens reveals the structural forces that constrain autonomy and narrow options. Centering Reproductive Justice can help reduce harm and support meaningful reproductive agency throughout the course of care".
The commentary uses composite cases to show how systems often fail marginalized families:
- Bodily Autonomy: Legal restrictions on procedures like selective reduction can lead to preventable medical tragedies.
- The Right to Have Children: A lack of infrastructure for perinatal palliative care can leave parents who continue high-risk pregnancies feeling isolated.
- The Right Not to Have Children: Restrictive policies can transform supportive care into an "enforced condition" for those denied abortion access.
- The Right to Parent: Eligibility criteria for maternal-fetal surgery, such as requiring temporary relocation, often exclude those facing economic or social disadvantages.
The authors call on health care leaders and policymakers to invest in supportive infrastructure and RJ-informed training to ensure all reproductive decisions are respected and supported.
In addition to Wilpers, the authors for this editorial include Saisahana Subburaj and Hazel Ekeke both from Penn Nursing; Simran Singh Jain and Lori Rodriguez from SisterSong Women of Color Reproductive Justice Collective; Shukri Jumale of The Chicago Institute for Fetal Health at Ann & Robert H. Lurie Children's Hospital; and Lucinda Canty of the Seedworks Health Equity in Nursing Program at the University of Massachusetts Amherst Elaine Marieb College of Nursing.
