Ethical considerations in choosing a model for population-based cystic fibrosis carrier screening

Abstract

• Cystic fibrosis (CF) carrier testing can be used to inform reproductive decision making, allowing carriers to avoid having a child with CF. • A government-funded, population-based CF carrier screening program would allow greater equity of access to this test. • The setting in which CF carrier screening is offered significantly affects the extent to which participants make well informed, voluntary decisions to accept or decline testing. • Screening offered before pregnancy and in non-clinical environments better promotes participant autonomy than screening offered in the prenatal consultation.