The increasing availability of information on the human genetic makeup presents both individuals and society with difficult decisions.
This paper explores the ethical and practical issues raised by genetic screening for sickle cell and thalassaemia major, by examining the emerging tension between allowing people to make informed choices, on the basis of genetic information, and prevention of haemoglobinopathies.
Within this broad context, the paper also explores the more practical issues of providing genetic screening for haemoglobinopathies, such as the meaning of counselling and screening for the general population ; the psychological and social implications for people identified as carriers ; and the organisation and delivery of services.
It concludes that screening is not always informed by a commitment to informed decision making.
Mots-clés Pascal : Thalassémie, Anémie hématie falciforme, Dépistage, Prénatal, Génétique, Ethique, Conseil génétique, Organisation santé, Service santé, Communication information, Effet psychologique, Impact social, Prévention, Hémopathie, Anémie hémolytique, Hémoglobinopathie, Maladie héréditaire, Système santé, Royaume Uni, Europe, Homme
Mots-clés Pascal anglais : Thalassemia, Sickle cell anemia, Medical screening, Prenatal, Genetics, Ethics, Genetic counseling, Public health organization, Health service, Information communication, Psychological effect, Social impact, Prevention, Hemopathy, Hemolytic anemia, Hemoglobinopathy, Genetic disease, Health system, United Kingdom, Europe, Human
Notice produite par :
Inist-CNRS - Institut de l'Information Scientifique et Technique
Cote : 98-0078167
Code Inist : 002B30A03B. Création : 14/05/1998.