Abstract
Intellectual disability with or without other anomalies is a common referral for genetic counseling. Sessions may include discussions of reproductive implications and other issues related to sex education. Patients with intellectual disability (ID) regularly meet barriers when trying to obtain sex education due to the beliefs and practices of unaffected individuals such as caregivers, family members, and health professionals. We surveyed genetic counselors to explore the frequency with which they are asked to provide sex education counseling and their comfort in doing so for patients with ID ages 9 – 17. Caregivers and patients most frequently asked about puberty, sex abuse prevention, and reproductive health. Genetic counselors were most comfortable when they could provide sex education counseling within the context of a particular condition or constellation of features. They were least comfortable when there was a lack of familiarity with the patient, caregiver, or the family’s culture. The most frequently cited barriers that prevented genetic counselors from providing sex education counseling were lack of time, lack of training, the patient’s ID being too profound, and the thought that genetic counselors should not be responsible for providing sex education counseling. While many respondents recognized that providing sex education counseling is not considered within the scope of a genetic counselor’s practice, respondents also acknowledged that they should be prepared for such discussions and were interested in having access to specific online and print resource guides specifically designed for use by genetic counselors to provide to patients with ID and their caregivers. Genetic counselors as well as medical professionals of all disciplines are encouraged to embrace the role of advocate and broach the issue of sexual health with caregivers and patients by directing them toward educational resources, if not providing sex education themselves to effectively serve the needs of patients and caregivers.