Ethics of Reproductive Genetic Carrier Screening: From the Clinic to the Population

Abstract

Reproductive genetic carrier screening (RCS) 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.

Qualitative study of GPs’ views and experiences of population-based preconception expanded carrier screening in the Netherlands: bioethical perspectives

“…Previous carrier screening tests have often targeted fewer genetic conditions, been offered to specific high-risk groups or been offered as commercial tests outside of the primary care system 3 17. Internationally, much genetic carrier screening is offered in early pregnancy 18–20. However, this is not the case in this study, since the focus is only on a test that is taken before conception.…”

“…3 17 Internationally, much genetic carrier screening is offered in early pregnancy. [18][19][20] However, this is not the case in this study, since the focus is only on a test that is taken before conception.…”

Ethical aspects of the changing landscape for spinal muscular atrophy management in Australia

“…RCS and PND are important interventions and can reduce family suffering. However, opting to have them should be a genuine choice for couples (based on factors such as respect for reproductive autonomy as well as considerations of equity and solidarity 36 ), not one influenced by money to be saved in the healthcare system through not treating a child with SMA.…”

Correspondence on “Screening for autosomal recessive and X-linked conditions during pregnancy and preconception: a practice resource of the American College of Medical Genetics and Genomics (ACMG)” by Gregg et al

“…The Resource fails to acknowledge the necessary shift toward such a screening approach. 3 The approach described in the Resource is more suited to the individualized clinical genetics setting and will not be feasible for population screening.…”