title: Implications of prenatal diagnosis of sickle cell disease.
abstract: Prenatal diagnosis (PND) of sickle cell disease (SCD) has been feasible since about 15 years. The number of PND performed for SCD has constantly increased during these years, but its availability raises difficult ethical questions for parents and counsellors. Concerning at-risk parents, only 50% (data in the literature) to 70% (personal data) ask for PND. Our study shows that mainly cultural reasons, then religious ones, educational level and the number of children in the family weigh on the parents' decision to request this diagnosis. The counsellors' position is difficult since clinical severity of the disease is highly variable, there is no early prognostic factor, and the median life expectancy of patients in industrialized countries exceeds 40 years. We need to define a counselling which would consider the image of the illness in the populations involved, in order to help parents understand the implications of the choice they are asked to make.
authors.affiliation: Centre de Transfusion Sanguine, Hôpital Necker, Paris, France.
authors.forename: M
authors.initials: M
authors.lastname: de Montalembert
authors.forename: M
authors.initials: M
authors.lastname: Guilloud-Bataille
authors.forename: A
authors.initials: A
authors.lastname: Ducros
authors.forename: F
authors.initials: F
authors.lastname: Galacteros
authors.forename: R
authors.initials: R
authors.lastname: Girot
authors.forename: C
authors.initials: C
authors.lastname: Herve
authors.forename: M
authors.initials: M
authors.lastname: Maier-Redelsperger
authors.forename: J
authors.initials: J
authors.lastname: Feingold
mesh_terms: D000025:Abortion, Eugenic; D000328:Adult; D000755:Anemia, Sickle Cell / Q000175:diagnosis / Q000235:genetics* / Q000517:prevention & control; D005260:Female; D005602:France; D005817:Genetic Counseling; D005820:Genetic Testing; D006801:Humans; D007231:Infant, Newborn; D008297:Male; D011247:Pregnancy; D011296:Prenatal Diagnosis; D012068:Religion and Medicine; D012307:Risk Factors; D012805:Sickle Cell Trait / Q000235:genetics*