Neonatal Screening for Treatable and Untreatable Disorders: Prospective Parents’ Opinions

Abstract

OBJECTIVE: In the Netherlands, in 2007, the national newborn screening program was expanded from 3 to 17 disorders that met the World Health Organization's Wilson and Jungner screening criteria, especially regarding treatability. The decision of whether to add diseases to the program is generally based on experts' advice, whereas the opinion of those whom it concerns—prospective parents—remains unknown. In this study, we investigated the opinion of prospective parents concerning newborn screening for disorders that are incurable yet treatable to some extent or even untreatable.