Reproductive genetic carrier screening (RCS), when offered to anyone regardless of their family history or ancestry, has been subject to the critique that it is a form of eugenics. Eugenics describes a range of practices that seek to use the science of heredity to improve the genetic composition of a population group. The term is associated with a range of unethical programmes that were taken up in various countries during the 20th century. Contemporary practice in medical genetics has, understandably, distanced (...) itself from such programmes. However, as RCS becomes more widespread, gains public funding and uses expanded gene panels, there are concerns that such programmes could be perceived as eugenic either in intent or outcome. The typical response to the eugenics critique of RCS is to emphasise the voluntary nature of both participating in screening and making subsequent reproductive choices. While safeguarding individuals’ freedom to choose in relation to screening is essential, we consider this response inadequate. By examining the specific ethical wrongs committed by eugenics in the past, we argue that to avoid the perception of RCS being a form of eugenics it is essential to attend to the broader normative context in which reproductive decisions occur. Furthermore, ethical RCS programmes must recognise and respond to their potential to shift societal norms that shape individual reproductive choices. (shrink)

Reproductive genetic carrier screening is increasingly being offered more widely, including to people with no family history or otherwise elevated chance of having a baby with a genetic condition. There are valid reasons to reject a prevention-focused public health ethics approach to such screening programs. Rejecting the prevention paradigm in this context has led to an emphasis on more individually-focused values of freedom of choice and fostering reproductive autonomy in RCS. We argue, however, that population-wide RCS has sufficient features in (...) common with other public health screening programs that it becomes important also to attend to its public health implications. Not doing so constitutes a failure to address the social conditions that significantly affect people’s capacity to exercise their reproductive autonomy. We discuss how a public health ethics approach to RCS is broader in focus than prevention. We also show that additional values inherent to ethical public health—such as equity and solidarity—are essential to underpin and inform the aims and implementation of reproductive carrier screening programs. (shrink)

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. (shrink)