Patient and parental attitudes toward genetic screening and its implications at an adult cystic fibrosis centre.
General population screening for cystic fibrosis carrier status in the United Kingdom would detect 71% of at-risk couples.
Proper counselling would allow these couples to make informed reproductive choices, including the possibility of prenatal diagnosis and the termination of an affected pregnancy.
However, children with cystic fibrosis born in this decode, given optimum treatment, now have an average life expectancy of 40 years, and there is no unanimity of opinion on how, where, when, or even if, screening should be offered.
The purpose of this questionnaire-based study was to examine the attitudes of an adult clinic population who have grown up with cystic fibrosis, and of their parents, towards genetic screening programmes and the controversies and ethical dilemmas surrounding such programmes in cystic fibrosis.
Mots-clés Pascal : Mucoviscidose, Dépistage, Ethique, Attitude parentale, Hétérozygotie, Questionnaire, Malade, Prénatal, Conseil génétique, Homme, Programme sanitaire, Appareil respiratoire pathologie, Appareil digestif pathologie, Pancréas pathologie, Maladie héréditaire
Mots-clés Pascal anglais : Mucoviscidosis, Medical screening, Ethics, Parental attitude, Heterozygozity, Questionnaire, Patient, Prenatal, Genetic counseling, Human, Sanitary program, Respiratory disease, Digestive diseases, Pancreatic disease, Genetic disease
Notice produite par :
Inist-CNRS - Institut de l'Information Scientifique et Technique
Cote : 94-0529716
Code Inist : 002B13C03. Création : 199501.