Measuring Opinions of Parents At-Risk for Adult-Onset Inherited Cancer Syndromes on Adolescent and Young Adult Children’s Direct-to-Consumer Genetic Testing

Thesis (Master's)--University of Washington, 2022Neither direct-to-consumer (DTC) genetic testing nor predictive genetic testing for adult-onset conditions is recommended for children due to ethical concerns and low clinical utility. However, parents with known mutations in disease-causing genes may be interested in pursuing this option for their children and present to genetic counseling. The Pediatric Testing Attitudes Scale (P-TAS) was previously developed to examine high risk parents' opinions about pediatric BRCA genetic testing for adult-onset breast/ovarian cancer. In an adapted version of the P-TAS for DTC genetic testing, we examined its factor structure, reliability, and validity in a sample of N=126 parents (M age = 47.2 years) with pathogenic variants in cancer risk genes represented on DTC panel tests. The average score on the P-TAS was 44 out of a maximum score of 60, indicating that a majority of parents generally held favorable opinions about testing their children for inherited cancer syndromes: the internal consistency of the full scale was high (α=0.91). A factor analysis identified two component scales, labeled Attitudes and Beliefs (α=0.93) and Decision Making and Communication (α=0.83). In a multivariable regression model, P-TAS co-factor validation accounted for 34% of variance in parental opinions, including the frequency of prior family communication about cancer and the likelihood of utilizing DTC genetic testing with children (R2 = .34, P < .001). Results suggest that the P-TAS is a reliable measure to assess high risk parents' opinions about pediatric DTC genetic testing, with promising validity. Applications of the P-TAS include informing genetic counseling practice and informing policy guidelines surrounding this form of genetic testing