Decision making after prenatal diagnosis of a syndrome predisposing to intellectual disability: What prospective parents need to know and the importance of non-medical information

Caroline Huyard (1)

1 CERAPS - Centre d'Etudes et de Recherches Administratives, Politiques et Sociales - UMR 8026

Background Recently researchers have suggested that non-medical information may impact the decision to continue or terminate a pregnancy after a prenatal diagnosis. This study is an investigation of what type of information prospective parents need for this decision making in the case of a condition predisposing to intellectual disability. Method Semistructured interviews were conducted in France, Belgium, and Germany with 33 parents whose children have a syndrome that predisposes to intellectual disability. Results The essential information related to three dimensions: (1) the foetus as a future child and an individual person; (2) the couple as future parents; and (3) the social environment of the future child and her parents, and especially the ability of the social environment to provide support. Conclusions The findings introduce a new perspective on these prospective parents’ essential needs, highlighting that these needs are not limited to medical information but encompass non-medical information and institutional patterns.

Mots clés: prenatal diagnosis; prenatal testing; information needs; information; decision making; Down syndrome; fragile X syndrome

Domaines: Ethique; Gynécologie et obstétrique; Génétique

Caroline Huyard. Decision making after prenatal diagnosis of a syndrome predisposing to intellectual disability: What prospective parents need to know and the importance of non-medical information. Journal of Intellectual and Developmental Disability, 2012, 37 (4), pp.315-323. ⟨10.3109/13668250.2012.726350⟩. ⟨hal-01760289⟩