Should Genetic Testing be Offered for Children? The Perspectives of Adolescents and Emerging Adults in Families with Li-Fraumeni Syndrome.

TitleShould Genetic Testing be Offered for Children? The Perspectives of Adolescents and Emerging Adults in Families with Li-Fraumeni Syndrome.
Publication TypeJournal Article
Year of Publication2017
AuthorsAlderfer, M. A., Lindell R. B., Viadro C. I., Zelley K., Valdez J., Mandrell B., Ford C. A., & Nichols K. E.
JournalJournal of genetic counseling
Volume26
Issue5
Pagination1106-1115
Date Published2017 Oct
ISSN1573-3599
KeywordsAdolescent; Adult; Child; Female; Genetic Predisposition to Disease; Genetic Testing; Germ-Line Mutation; Humans; Li-Fraumeni Syndrome; Male; Parent-Child Relations; Young Adult
Abstract

Whether children should be offered genetic testing for cancer risk is much debated but young voices are rarely heard in these conversations. The current study explored perspectives of genetic testing held by adolescents and emerging adults in families with Li Fraumeni syndrome (LFS). Twelve 12- to 25-year-olds in families with LFS completed qualitative interviews for this study. All believed that testing should be offered for children but many qualified this statement saying parental approval would be needed and testing should be optional. Genetic testing was seen as way to learn of risk status, allow for disease prevention efforts, and reduce uncertainty and anxiety. Perceived disadvantages included negative emotions associated with the testing result. Participants generally felt that children should be involved in the testing decision, but that parents could unilaterally decide to have a child tested in certain circumstances (e.g., young age, high risk). All who were aware of having been tested and of their test result (n = 7; 4 positive) said testing had no negative impact on their outlook and they agreed with the decision to undergo testing. Implications of these findings for clinical practice and future research are discussed.

DOI10.1007/s10897-017-0091-x
Alternate JournalJ Genet Couns