The clinical introduction of genetic testing for Alzheimer disease : An ethical perspective.
- Primary caregivers should be aware of recent progress in the genetics of Alzheimer disease (AD) and of the clinical and ethical considerations raised regarding the introduction of genetic testing for purposes of disease prediction and susceptibility (risk) analysis in asymptomatic individuals and diagnosis in patients who present clinically with dementia.
This statement addresses arguments for and against clinical genetic testing.
- The 20 participants were selected by the investigators (S.G.P., T.H.M., A.B.Z., and P.J.W.) to achieve balance in the areas of genetics, counseling, ethics, and public policy, and to include leadership from related consensus projects.
The consensus group met twice in closed meetings and carried on extensive correspondence over 2 years (1995-1997).
The project was supported by the National Human Genome Research Institute of the National Institutes of Health.
Evidence. - All 4 involved chromosomes were discussed in group meetings against a background of information from several focus group sessions with AD-affected families.
The focus groups comprised volunteers identified by the Cleveland Area Chapter of the Alzheimer's Disease and Related Disorders Association and represented a variety of ethnic populations.
Consensus Process. - The first draft was written in April 1996 by the principal investigator (S.G.P.) after the consensus group had met twice. (...)
Mots-clés Pascal : Démence Alzheimer, Déterminisme génétique, Essai clinique, Critère sélection, Caractère autosomique, Mutation, Programme scientifique, Recommandation, Ethique, Responsabilité professionnelle, Apolipoprotéine E, Homme, Système nerveux pathologie, Système nerveux central pathologie, Encéphale pathologie, Maladie dégénérative, Métabolisme pathologie, Organisation santé
Mots-clés Pascal anglais : Alzheimer disease, Genetic inheritance, Clinical trial, Selection criterion, Autosomal character, Mutation, Scientific program, Recommendation, Ethics, Occupational responsibility, Apolipoprotein E, Human, Nervous system diseases, Central nervous system disease, Cerebral disorder, Degenerative disease, Metabolic diseases, Public health organization
Notice produite par :
Inist-CNRS - Institut de l'Information Scientifique et Technique
Cote : 97-0220366
Code Inist : 002B17G. Création : 21/05/1997.