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
• ISSN: 1552-4825; 1552-4833; 1552-4833
• DOI: 10.1002/ajmg.a.34107

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 well as psychological and social considerations, and gives rise to the question how parents and professionals weigh up the child's best interest in practice. In this qualitative study, we followed six extended families involved in genetic testing for hypertrophic cardiomyopathy in the Netherlands for 3½ years. In total 57 members of these families were interviewed in depth; many of them more than once. Our empirical analysis shows that the best interest of a child is constructed via long‐term processes in the broader context of family and kin. In this context, “best interests” are considered and reconsidered. We conclude that a child's best interest should not be framed as the result of an instantaneous agreement between parents and professionals. In dealing with genetic testing of children, parents as well as professionals reflect on and learn from the processes of generating new meanings of “best interest.” To enable professionals to deal with the variety in family life, these learning processes should be documented closely. © 2011 Wiley‐Liss, Inc.