Publicatie

Publication date

Introducing new biotechnology into society: canvassing parent’s opinions to possible newborn DMD and FXS screening.

Plass, A.M., Kleinveld, J., Vroom, E. Introducing new biotechnology into society: canvassing parent’s opinions to possible newborn DMD and FXS screening. Psychology & Health: 2013, 28(suppl. 1), p. 137. Abstract: 27th Conference of the European Health Psychology Society: 'Well-being, Quality of Life and Caregiving'. 16-20 juli 2013, Bordeaux.
Background: Increased technological possibilities make it possible to early identify ‘untreatable’ childhood-onset conditions, e.g. DMD and FXS. This could prevent the diagnostic odyssey, and provide timely genetic counselling. Consequently, parents might not be able to enjoy the first symptom-free period. This study investigated the opinion of (prospective) parents about possible expansion of the newborn screening program with DMD or FXS, and assessed developmental worries during the first year. Methods: Cross sectional study, using a structured Internet questionnaire. Findings: 998 respondents filled out the questionnaire, 107 had a child with FXS, and 77 a son with DMD. Parents favoured testing newborns for FXS and DMD. Parents of affected children had significantly more developmental worries during the first year. Parents of FXS children worried most. Conclusions: A true carefree period for parents of affected children seems not to exist. ‘Good parenting’ by far outweighed the possibility of enjoying a carefree period.