352 - Parental Views of Pediatric Direct-to-Consumer Genetic Testing for Adult-Onset Inherited Cancer Syndromes in their Children: Implications for Education, Clinical Care, and Policy
Monday, May 1, 2023
9:30 AM – 11:30 AM ET
Poster Number: 352 Publication Number: 352.448
Marcelo M. Sleiman, Georgetown University School of Medicine, Washington, DC, United States; Mary Rose Yockel, Georgetown University, Washington, DC, United States; Kenneth Tercyak, Georgetown University, Washington, DC, United States; Beth N.. Peshkin, Georgetown University School of Medicine, Washington, DC, United States; Tianyu Zheng, Georgetown University School of Medicine, Arlington, VA, United States
Research Specialist Georgetown Lombardi Comprehensive Cancer Center Washington, District of Columbia, United States
Background: Predictive genetic testing for adult-onset inherited cancer syndromes (AOICS) is generally discouraged until young adulthood. However, high-risk parents carrying alterations in AOICS genes may seek information about their minor children’s disease risks from direct-to-consumer (DTC) testing panels. Objective: Parental opinions about the clinical and policy implications of pediatric DTC genetic testing (pDTC) for AOICS remains largely unknown, and were examined here as part of an inquiry into its clinical and public health implications. Design/Methods: N=126 high-risk parents (M age=47, 10% male, 6% minority) were ascertained and surveyed. Opinions (risks, benefits) about pDTC for AOICS and cancer knowledge and pDTC test utilization were assessed and analyzed. Results: Opinions about the risks of pDTC included lack of pediatric health care provider (e.g., pediatrician, 68%) and genetic counselor engagement (64%), and the psychosocial impacts of the information (e.g., stress/worry, 45%). Benefits included convenience of testing (72%), usefulness of information (70%), reliability/accuracy of tests (53%), amount of information (49%), and ancestry awareness (46%). High-risk parents’ perceived benefits outweigh risks by about 2:1, and were endorsed by nearly 60% of those surveyed: knowledge about AOICS was high (52%) and inversely associated with opinions about pDTC risks (r=-.25, p=.005). Actual utilization of pDTC testing was modest, at 9% of high-risk parents’ minor children. In a multivariable model, adjusting for the effects of sociodemographic and clinical factors, AOICS knowledge was significantly associated with parents’ opinions of the risks of pDTC: those who were more knowledgeable were less likely to evaluate pDTC as risky (B= -1.72, SE B= .63, df=1, p=.007).
Conclusion(s): Within this population of high risk parents, a number of favorable opinions about pDTC for AOICS information were reported, along with modest test use. Opinions regarding pDTC risks were associated with higher knowledge, such that more informed parents held more favorable views. Understanding carrier parents’ beliefs about pDTC is important because of its increasing availability for children and lack of regulation over its use. Access to plain language support resources is necessary to inform parents about current pediatric practices and policies concerning pDTC for the identification AOICS risks in children.
