Constructing "best interests": Genetic testing of children in families with hypertrophic cardiomyopathy
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...
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Published in | American journal of medical genetics. Part A Vol. 155A; no. 8; pp. 1930 - 1938 |
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Main Authors | , , , , |
Format | Journal Article |
Language | English |
Published |
Hoboken
Wiley Subscription Services, Inc., A Wiley Company
01.08.2011
Wiley-Liss |
Subjects | |
Online Access | Get full text |
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Summary: | 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. |
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Bibliography: | Dutch Organization for Scientific Research (NWO) istex:A7882C455598F87E22DDD78AADC0D8B44D48CAC7 How to Cite this Article: Geelen E, Van Hoyweghen I, Doevendans PA, Marcelis CLM, Horstman K. 2011. Constructing "best interests": Genetic testing of children in families with hypertrophic cardiomyopathy. Am J Med Genet Part A 155:1930-1938. ark:/67375/WNG-6L9C4KDZ-5 ArticleID:AJMG34107 How to Cite this Article: Geelen E, Van Hoyweghen I, Doevendans PA, Marcelis CLM, Horstman K. 2011. Constructing “best interests”: Genetic testing of children in families with hypertrophic cardiomyopathy. Am J Med Genet Part A 155:1930–1938. ObjectType-Article-2 SourceType-Scholarly Journals-1 ObjectType-Feature-1 content type line 23 ObjectType-Article-1 ObjectType-Feature-2 |
ISSN: | 1552-4825 1552-4833 1552-4833 |
DOI: | 10.1002/ajmg.a.34107 |