Genomic advances have contributed to a proliferation of newborn screening (NBS)
programs. Psychosocial consequences of NBS have been identified as risks to these public …

In genomics, perceived and personal utility have been proposed as constructs of value that
include the subjective meanings and uses of genetic testing. Precisely what constitutes …

As whole genome sequencing is being considered as a tool to deliver expanded newborn
screening (NBS) globally, the range of equivocal results it could produce are gaining …

Background Newborn screening (NBS) for spinal muscular atrophy (SMA) is a recognised
model through which health outcomes can be improved. However, perspectives of parents …

Purpose Cystic fibrosis (CF) was added to the German newborn bloodspot screening (NBS)
panel in 2016. This study assesses parental perceptions of CF‐NBS and confirmatory …

In a context of increasing international dialogue around the appropriate means and ends of
newborn screening programmes, it is critical to explore the perspectives of those directly …

Abstract Background & Objectives This study aims to explore and elucidate parents'
experience of newborn screening [NBS], with the overarching goal of identifying desiderata …

Background The process of receiving a communication of positivity for metabolic diseases at
expanded newborn screening (ENBS) is extremely articulated, involves a variety of actors …

As a psychologist and an ethicist, we have explored empirically newborn screening consent
and communication processes. In this paper we consider the impact on families if newborn …

In Germany, screening for cystic fibrosis (CF) is part of the newborn screening since
September 2016. The risk of psychological harm due to false-positive screening results is a …