Decision-making for termination of pregnancy following non-invasive prenatal testing: a qualitative exploration of french, english and German healthcare professionals’ perceptions and concerns

Non-invasive prenatal testing (NIPT) is offered in the French, English and German public healthcare systems for fetal aneuploidy screening from a relatively early stage of pregnancy (around 10-12 weeks of gestation). Results from NIPT can be used to inform decisions about subsequent diagnostic procedures, and pregnancy management, which may include options for termination of pregnancy (TOP). Since NIPT is a screening test and not diagnostic, clinical guidelines recommend confirmation through an invasive procedure. Across the three countries, healthcare professionals (HCPs) expressed concerns that women may make uninformed decisions around TOP, in the sense of not being fully informed either regarding the test performance or regarding the fetal condition. This paper draws on a comprehensive literature review, and data from a comparative study including 58 semi-structured interviews with French, English and German healthcare professionals (HCPs) on ethical issues, perceptions and regulations regarding NIPT and TOP. HCPs in our study expressed a number of fears and concerns about how and why women or prospective parents might make uninformed decisions about TOP. Their key concerns include decisions being made based on a NIPT result without diagnostic confirmation, with references to anecdotal accounts, and biased or uninformed perceptions of genetic conditions such as Down's Syndrome. Our findings highlight how the desire for autonomy in pregnancy decisions may in some ways conflict with HCPs' duty to ensure that counselling takes place, and that women or prospective parents have an adequate level of understanding of the implications of NIPT.