Decision-making by expectant parents: NIPT, NIPD, and current methods of prenatal screening for Down’s Syndrome (Evidence Review)

The objective of this review is to examine research exploring the decisions that women and couples make about prenatal screening and testing and the factors that influence their decisions. This will inform and offer context for the Nuffield Council of Bioethics’ inquiry on non-invasive prenatal testing (NIPT) and how its possible introduction into the NHS screening programme could affect decision-making in pregnancy. Studies deemed eligible for inclusion were full-length peer-reviewed journal articles and other publications in the English language that present data on parental decision-making in the context of NIPT (for Down’s syndrome [DS], Edward’s syndrome [ES], and Patau syndrome [PS]), NIPD for other genetic conditions, and current prenatal screening and testing for DS. The shortage of studies about NIPT and NIPD means that sources are discussed from the UK and beyond. Publications that do not rely on primary empirical data were excluded. Given time and money constraints, publications were also excluded if focusing exclusively on scientific and clinical development and application, cost-effectiveness, marketing and commercial analysis, and bioethical considerations (although the latter topic is discussed in section five). Thirteen studies were found that explore the decision-making experiences of women in the context of NIPT for DS, ES, and PS. Positive experiences were often reported with respect to NIPT’s perceived accuracy, safety, and capacity to provide an earlier test result. However, women also identified several concerns requiring consideration before NIPT is introduced into the NHS screening programme. Both advantages and disadvantages of NIPT were also outlined in twenty-three studies examining peoples’ views of, and attitudes towards, NIPT for DS, ES, and PS. Many more studies examine expectant parents’ decision-making relating to current prenatal screening for DS and diagnostic testing, and whether to continue or terminate a pregnancy following a diagnosis of DS, ES, or PS. This literature from diverse disciplines sketches out key issues around choice, care, responsibility, parenting, and disability. After statistics of screening uptake and terminations of pregnancy in the UK are outlined, the evidence review identifies gaps in the literature that future research on NIPT could explore. The review concludes by suggesting that more research on the experiences and decision-making processes of expectant parents with respect to NIPT – and on the opinions, anxieties, and suggestions of healthcare professionals and policymakers, charities, academics, and the wider public – a matter of urgency. Such studies will likely ignite more reflective and collective dialogues, and better communication between expectant parents and professionals, around NIPT and its implementation in NHS prenatal care