Parents' Attitudes Toward Pediatric Genetic Testing for Common Disease Risk

Author:

Tercyak Kenneth P.1,Hensley Alford Sharon2,Emmons Karen M.3,Lipkus Isaac M.4,Wilfond Benjamin S.5,McBride Colleen M.6

Affiliation:

1. Lombardi Comprehensive Cancer Center and Departments of Oncology and Pediatrics, Georgetown University Medical Center, Washington, DC;

2. Department of Biostatistics and Research Epidemiology, Henry Ford Health System, Detroit, Michigan;

3. Dana-Farber Cancer Institute and Harvard School of Public Health, Boston, Massachusetts;

4. Duke University School of Nursing, Durham, North Carolina;

5. Treuman Katz Center for Pediatric Bioethics, Seattle Children's Hospital and Department of Pediatrics, University of Washington School of Medicine, Seattle, Washington; and

6. Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland

Abstract

OBJECTIVE: To describe parents' attitudes toward pediatric genetic testing for common, adult-onset health conditions and to identify factors underlying these attitudes. PARTICIPANTS AND METHODS: Parents (n = 219) enrolled in a large, group-practice health plan were offered a “multiplex” genetic test for susceptibility to 8 common, adult-onset health conditions and completed an online survey assessing attitudes and beliefs about the risks and benefits of the test for their child, their willingness to consider having their child tested, and other psychosocial variables. RESULTS: Parents viewed the benefits of pediatric testing to outweigh its risks (positive decisional balance) and were moderately interested in pediatric testing. Variables associated with positive decisional balance included greater interest in knowing about gene-health associations in their child, anticipation of less difficulty understanding their child's genetic health risks, and more positive emotional reactions to learning about their child's decreased health risks (adjusted R2 = 0.33, P < .0001). Similarly, variables associated with greater parental willingness to test were being a mother (versus being a father), greater perceived risk of diseases in their child, greater interest in knowing about gene-health relationships in their child, anticipating less difficulty learning about their child's genetic health risks, anticipating more positive emotional reactions to learning about their child's decreased health risks, and positive decisional balance (adjusted R2 = 0.57, P < .0001). CONCLUSIONS: As genetic susceptibility testing for common, adult-onset health conditions proliferates, pediatricians should anticipate parents' interest in testing children and be prepared to facilitate informed decision making about such testing.

Publisher

American Academy of Pediatrics (AAP)

Subject

Pediatrics, Perinatology, and Child Health

Reference35 articles.

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