Constructing "best interests": Genetic testing of children in families with hypertrophic cardiomyopathy

• Published in: American journal of medical genetics. Part A Vol. 155A; no. 8; pp. 1930 - 1938
• Main Authors: Geelen, Els, Van Hoyweghen, Ine, Doevendans, Pieter A., Marcelis, Carlo L.M., Horstman, Klasien
• Format: Journal Article
• Language: English
• Published: Hoboken Wiley Subscription Services, Inc., A Wiley Company 01.08.2011; Wiley-Liss
• Subjects: best interest; Biological and medical sciences; Cardiology. Vascular system; Cardiomyopathy; Cardiomyopathy, Hypertrophic, Familial - genetics; Cardiomyopathy, Hypertrophic, Familial - psychology; Child; Child Advocacy; Children; children, family; family; General aspects. Genetic counseling; Genetic screening; genetic testing; Genetic Testing - ethics; Genetic Testing - psychology; Heart; Humans; hypertrophic cardiomyopathy; Interviews as Topic; Learning; Medical genetics; Medical sciences; Myocarditis. Cardiomyopathies; Parental Notification; Truth Disclosure; Human; Family study; Cardiovascular disease; best interest; Myocardial disease; Genetic disease; Interest; Genetic counseling; children; Heart disease; genetic testing; Hypertrophic cardiomyopathy; family; Child

Professional guidelines on genetic testing of children have recently shifted their focus from protecting the child's autonomous choice to professionals, together with parents, striving to work in the child's “best interest.” This notion of “best interest” allows room for therapeutical as w...