Abstract

Definition of the problem The present article focuses on the current international ethical debate on “responsible implementation” of expanded carrier screening to public healthcare systems. Expanded carrier screening is a novel genetic test which aims to provide information to couples about whether both partners carry a genetic variation for the same recessively inherited condition. It was introduced to the market by commercial laboratories in the U.S. in 2010; since about 2015, however, international debates have emerged on how and why to offer the screening as a public health service. Arguments It is shown that, initially, enhancement of couples’ reproductive autonomy, not prevention of recessive disorders, has been established as the ethically well-founded aim and guiding principle of responsible implementation. Recently, however, in 2019, three well-known Dutch bioethicists argued that this aim has been embraced without much reflection and should therefore be replaced with the guiding principle of “responsible parenthood”. According to the latter, autonomous reproductive decision-making of couples or women is morally acceptable solely when carrier screening is done only during pregnancy. Before pregnancy, by contrast, couples are held to have a moral duty to take preventive measures if their future children are at risk of being affected by one of the “worst” recessive conditions. In the present paper, both of these conflicting ethical framings of expanded carrier screening are critically examined. Conclusions While the aim of reproductive autonomy also has problematic aspects, the notion of “responsible parenthood” is much more objectionable since it challenges voluntary participation in carrier screening, argues for directive genetic counseling, limits reproductive self-determination of women and couples, and introduces dubious concepts to the debate.