Editing Future Generations, Centering Translational Justice: How Do Potential End Users Imagine the Benefits and Tradeoffs of Prenatal Genetic Therapies?

As genomics inches towards editing the fetus, the ethical and social implications of experimental treatments and trials of genetic therapies are heightened. Issues of consent, ongoing monitoring, uncertainty, intergenerational outcomes, affordability, and health equity concerns highlight a need to carefully weigh risks against potential benefits for all involved. Prenatal genetic therapies may someday reduce mortality, severe morbidity and the cost of pediatric treatments, including emotional and financial burdens on parents. But how do prospective patient-subjects/families imagine the benefits and tradeoffs of prenatal genetic interventions? Operationalizing “translational justice” in gene editing approaches requires honoring the values of end-users, including families, communities, and clinicians. This panel brings together perspectives on translational justice from several communities potentially impacted by prenatal genetic therapies. The first presenter will describe the perspectives of those currently involved in an active experimental fetal intervention program, and efforts to engage prospective patient communities affected by Angelman syndrome and Spinal Muscular Atrophy (SMA). The second presenter will describe the views of individuals with Sickle Cell Disease (SCD) regarding prenatal testing and the potential for future in utero gene therapies, in the context of historical social injustice. The third presenter will discuss the complexities of preconception and prenatal management of phenylketonuria (PKU) in the context of emerging gene therapies. The final presenter will report on the views of sex and gender minorities regarding potential future reprogenomic interventions. All speakers will explore ways to align community experiences and priorities with scientific and clinical knowledge, centering justice in the translation of genetic therapies.

Authors: Julia Brown, University of California, San Francisco; Marsha Michie, Case Western Reserve University; Megan Allyse, Mayo Clinic; Shameka Thomas, The Ohio State University