Perceived Utility of Genetic Counseling for Individuals with Eating Disorders
Capstone Project Committee: Lauren Doyle, MGC, CGC, Sarah Hart, PhD, MS, MA, Jehannine Austin, PhD, MSc, CCGC/CGC, Cynthia Bulik, PhD, FAED
Objective: The purpose of this study was to explore the perceptions of risk for recurrence and causation as well as perceived interest in genetic counseling and testing among individuals with eating disorders. Method: An online survey was shared via support organizations and prominent bloggers in the eating disorder community to recruit individuals with a personal history of an eating disorder. The survey was a combination of multiple choice and free form text box questions, including the ED100K, an eating disorder diagnostic questionnaire. Results: Main findings included an overestimation of recurrence risk in first-degree relatives and negative influence on childbearing decisions in a notable minority of participants. After imagined experience of genetic counseling, participants reported decreased feelings of stigma, shame, and guilt. Discussion: It seems that genetic counseling could be beneficial in providing accurate recurrence risk information to individuals with eating disorders while also facilitating decreased feelings of guilt, stigma, and shame, which may encourage earlier support seeking and recovery among this population.