Optional screening for DMD: reasons given by mothers for opting in or out

Abstract

Mothers of baby boys in three areas of the UK were offered a newborn screening test for Duchenne Muscular Dystrophy (DMD) as an extra, optional test. They were asked to complete a short questionnaire which provided data on their decision about screening, their reason and their occupation. The aim of the study was to explore the reasons women gave and any associations between reason given, uptake and occupation. The reasons given reflected three perceptions of screening: screening as a routine procedure; screening for reassurance; screening for disease detection. Women who accepted the test were more likely to give a routine reason than those who refused it. Screening was more likely to be seen as providing reassurance as one moved down the occupational hierarchy. Midwives should be aware that even though a screening test is delivered as an optional extra it may still be regarded by some women as routine.