Published online August 24, 2009
PEDIATRICS Vol. 124 No. 3 September 2009, pp. e432-e438 (doi:10.1542/peds.2008-2389)
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ARTICLE

Parents' Interest in Predictive Genetic Testing for Their Children When a Disease Has No Treatment

Beth A. Tarini, MD, MSa, Dianne Singer, MPHa, Sarah J. Clark, MPHa and Matthew M. Davis, MD, MAPPa,b,c

a Child Health Evaluation and Research Unit, Division of General Pediatrics
b Division of General Medicine
c Gerald R. Ford School of Public Policy, University of Michigan, Ann Arbor, Michigan

OBJECTIVE: The goal was to measure parents' interest in obtaining predictive genetic testing for their children for a disease that has no treatment.

METHODS: We conducted a nationally representative, Internet-based survey of parents. Parents received 2 vignettes describing hypothetical diseases without treatments. The first vignette described a disease in which symptoms were severe and timing of symptom onset was uncertain. The second vignette described a disease in which both symptom severity and timing of symptom onset were uncertain. Parents reported their interest in predictive genetic testing for their youngest child in each vignette by using a 5-point Likert scale. We collected information on parents' demographic features and parents' general opinions about genetic testing. We conducted logistic regression analyses to evaluate the independent associations between these factors and parents' interest in testing for both vignettes.

RESULTS: The response rate was 71%. For the first vignette, 35% of parents were definitely or probably interested in predictive genetic testing for their youngest child, 35% were unsure, and 31% were definitely or probably not interested. Responses were similar for the second vignette. More than one fourth of parents consistently expressed interest in testing in both vignettes.

CONCLUSIONS: Approximately one third of parents are interested in predictive genetic testing for their children, even for disorders with no treatment. Uncertainty about the severity of symptoms was not related to parents' testing preferences.

Key Words: predictive genetic testing • parents • decision-making • children

Accepted Apr 10, 2009.


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