Understanding the Ethical Values Shaping U.S. and European Prenatal Genetic Screening Approaches

Kelly Ormond, MS, CGC – Health Ethics & Policy Lab – ETH Zurich

Abstract: Prenatal genetic screening is increasingly accepted as a standard component of prenatal care, but is largely considered to have greater ethical implications compared to other screening. Use of prenatal genetic screening is broad across Europe, yet the ethics literature has primarily confined its examination of socio-political values that support prenatal genetic screening to a small number of countries (U.K., Netherlands, etc.), even though uptake may be higher in non-studied countries due to its inclusion in government funded healthcare programs. Based on an integrative literature review, we will assess the ethical values that underlie the differing regulatory approaches of prenatal genetic screening in Europe and discuss how this affects patient access and decision-making, with a focus on countries that have been less explored. Evidence suggests variability in normative priorities and concerns based on funding (private payers and/or public insurance programs), eligibility criteria (high-risk patients or general pregnancy population), included conditions (fetal aneuploidy or expanded panels), and clinical practices that are encouraged or mandated in professional guidelines or national policy (timing and contents of pre- and post-screen counseling). We will compare this with the U.S., including similar and divergent approaches to concepts such as patient autonomy, the right not to know, distributive justice, and disability rights, and how culturally informed values may influence the implementation of future prenatal genetic technologies. This is especially relevant to foster cross-cultural scholarship, understanding of national differences, and to identify values with broad global appeal that should serve as normative foundations for prenatal genetics.

Keywords: Prenatal genetic screening