Measuring high‐risk parents' opinions about direct‐to‐consumer genetic testing for adult‐onset inherited cancer syndromes in their adolescent and young adult children

Abstract

AbstractNeither direct‐to‐consumer (DTC) genetic testing nor predictive genetic testing for adult‐onset conditions is recommended for minor children due to ethical concerns and low clinical utility. However, parents with pathogenic variants (PVs) in disease‐causing genes may be interested in pursuing genetic testing that includes the familial PV for their children. 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. Here, the psychometric properties of the P‐TAS were examined in a new sample of N = 126 parents (M age = 47.2 years) with PVs in a more complete set of cancer risk genes represented on DTC panel tests. The mean 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 adult‐onset 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‐factors 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 = 0.34, p < 0.001). Results suggest that the P‐TAS remains a reliable measure to assess high‐risk parents' opinions about pediatric DTC genetic testing for adult‐onset conditions, with promising validity. Applications of the P‐TAS include informing genetic counseling practice, pediatric medical care, and policy guidelines surrounding DTC genetic testing.