Exploring Genetic Counselors’ Opinions and Practices Ordering Genetic Testing for Minors for Adult-Onset Hereditary Cancer Syndromes
Aubrey Lewis
Co-Presenters: Individual Presentation
College: The College of Health Professions and Human Services
Major: Genetic Counseling
Faculty Research Mentor: Jill Fischer
Abstract:
PurposeThere is ongoing ethical debate in the field of genetic counseling surrounding whether children should undergo genetic testing for adult-onset conditions. The National Society of Genetic Counselors discourages testing children for adult-onset genetic conditions until the child is at least age 18. This research study explores genetic counselors’ experiences and practices in testing minors for adult-onset hereditary cancer syndromes (HCS).MethodsA total of 80 genetic counselors participated in this research by completing a survey assessing their views and practices regarding testing children for adult-onset HCS. The survey asked demographic information such as the participant’s age, and how long they have worked in their role, as well as questions regarding participant’s practices in ordering genetic testing for adult-onset conditions for children. Open-ended questions were asked to further explore participants’ experiences.ConclusionThe results indicate a significant statistical correlation between genetic counselors who have arranged genetic testing for minors for adult-onset HCS genetic testing and genetic counselors who believed it was appropriate to test children for adult-onset HCS. Genetic counselors who endorsed testing of minors in all or some cases were much more likely to have arranged the testing. Genetic counselors who indicated it was okay to test children in some cases specified that testing would be acceptable to resolve parental anxiety, if the minor was older and could understand the implications of the testing, or if it would change medical management for the child.SignificanceThese findings suggest that genetic counselors consider multiple factors when deciding whether to arrange genetic testing for adult-onset HCS testing for minors, and that the decision to test should not be solely based on the child’s age. This research highlights the importance of understanding the motivations of parents or guardians requesting testing, and thoroughly evaluating the risks, benefits, and implications for the child before proceeding with genetic testing for adult-onset HCS testing in minors.Keywords: Genetic Counseling, Genetic Testing, Children, Adult-Onset Cancer Syndromes