Emphasizing parental choice on newborn screening

This study assessed the implications of changing the protocol for newborn screening for Duchenne muscular dystrophy (DMD) to make choice more explicit. In the intervention group, if screening was requested, a separate card was used. Mothers from both intervention and control groups completed a questionnaire providing data on satisfaction, awareness the test was optional, choice and worry. Overall the intervention did improve satisfaction and awareness that the test was optional with no increase in levels of worry. However, some mothers felt they had been given a choice about screening, but were not aware that the test was optional. There is evidence that even with a rigorous service delivery protocol situations do arise where a decision to screen may not be ‘consented’. This raises important questions about the feasibility of obtaining consent for other newborn screening tests and subsequent storage of DNA