Ethical Considerations With CFTR Modulator Use in Pregnancy

Since the introduction of CFTR modulators, pregnancy rates in women with CF have doubled. Individuals with CF have improved health and increased life expectancy, so that bearing children is possible without compromising the mother's health. The evidence for the use of CFTR modulators in pregnancy is emerging, but concerns remain regarding the possibility of fetal toxicity. Consequently, CF clinicians and obstetricians have the difficult role of supporting couples to make informed decisions. Here we present what is known regarding CFTR modulator use in pregnancy and highlight key ethical considerations. We present four scenarios: (1) women with CF with an unaffected fetus, (2) women with CF with an affected fetus, (3) carrier-positive women and couples with a CF fetus, and (4) breastfeeding while taking modulator therapy (affected or unaffected fetus), and explore ethical considerations in each scenario. We hope to highlight the real-world dilemma confronting parents, CF clinicians and obstetricians and the urgent need for research to allow us to make informed decisions.