Abstract
In recent years it has become recognized that many genetic disorders, such as VCFS, may include psychiatric manifestations as part of the phenotype. Individuals diagnosed with one of these disorders have an increased risk to develop psychiatric illness in childhood or as adults. Previous research by Sachs (2008) demonstrated that parents of children with VCFS preferred to learn about the risk of psychiatric illness from a medical provider at the time that the diagnosis is made. However, in practice many of the parents learned about the increased risk for psychiatric conditions through the internet. In the current study, we wished to explore the opinions and practices of genetic counselors regarding the disclosure of risk for psychiatric illness that accompanies VCFS, Klinefelter syndrome, Prader-Willi and Williams syndrome. We recruited prenatal and pediatric genetic counselors through the NSGC listserv to complete an anonymous, online survey that included multiple choice and Likert-scale questions. A total of 42 prenatal and 38 pediatric counselors completed the survey, for a total of 80 responses. Overall, the prenatal counselors were more likely than the pediatric counselors to discuss the risk to develop psychiatric illness with families. However, the prenatal counselors reported that they often only mention the increased risk to families while the pediatric counselors reported they were more likely to discuss details, such as treatment options, diagnostic criteria and natural history. Our participants reported that if there were better treatment and/or preventative options to offer families they would feel more comfortable discussing the risk with families. Interestingly, the respondents reported that the ability to offer predictive genetic testing for mental illness would not have a major impact on their likelihood to discuss the increased risk. Our findings suggest that future efforts should focus on increasing counselors’ knowledge of and comfort regarding mental illness.