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Published online December 21, 2009
PEDIATRICS Vol. 125 No. 1 January 2010, pp. e99-e106 (doi:10.1542/peds.2009-0269)
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ARTICLE

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

Anne Marie Catharina Plass, PhDa, Carla Geertruida van El, PhDa,b, Toine Pieters, PhDb, Martina Cornelia Cornel, MD, PhDa

a Department of Clinical Genetics, Community Genetics, VU University Medical Center and EMGO Institute for Health and Care Research, Amsterdam, Netherlands
b Department of Medical Humanities, VU University Medical Center, Amsterdam, Netherlands

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.

METHODS: A structured questionnaire that consisted of 3 parts in which similar questions were posed about treatable, less treatable, and untreatable childhood-onset disorders was posted on the Web site of a national pregnancy fair.

RESULTS: A total of 1631 prospective parents filled out the questionnaire, 259 of whom were excluded. In contrast to current policy, respondents showed a positive attitude toward inclusion of less treatable (88%) or untreatable childhood-onset disorders (73%) within the national newborn screening program. Respondents who already had children at the time of completing the questionnaire were even more in favor of screening for especially untreatable disorders. The most important reason mentioned was to prevent a long diagnostic quest. Obtaining information to enable reproductive choices in future pregnancies was hardly mentioned.

CONCLUSIONS: Prospective parents in the Dutch population seem interested in newborn screening for untreatable childhood-onset disorders; therefore, we argue that additional debate of pros and cons is needed among policy makers, health care professionals, and consumers.

Key Words: neonatal screening • extension • parents' opinion • untreatable diseases • childhood onset diseases

Abbreviations: PKU—phenylketonuria • CF—cystic fibrosis • DMD—Duchenne muscular dystrophy

Accepted Jul 18, 2009.


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