ROZALIA VALENTINE
Capstone Project Committee: Rachel Mills, M.S., CGC; Lauren Doyle, M.S., CGC; Tracy Nichols, Ph.D.
Disclosure is the act of sharing a stigmatized identity, and members of the LGBTQ+ make decisions related to disclosure multiple times throughout their life. Disclosure in medical settings can contribute to perceptions of care and outcomes for LGBTQ+ patients; however, little is understood about the process of decision-making regarding disclosure in the genetic counseling setting. As such, this study aimed to explore LGBTQ+ experiences in genetic counseling sessions and their disclosure behaviors. Fifty-five LGBTQ+ individuals who had attended a genetic counseling session and 91 genetic counselors completed online surveys. The patient survey assessed for disclosure behaviors, discrimination, and comfort in genetic counseling sessions. The counselor survey evaluated comfort with the LGBTQ+ population in counseling, whether counselors facilitate disclosure in session, and whether they tailor counseling for the LGBTQ+ population. Eighty-two percent of genetic counselors “rarely” or “never” ask about sexual orientation, and 69% “rarely” or “never” ask about gender identity. The majority of patients indicated they were not asked about their sexual orientation (87%) or gender identity (80%). Some patients reported experiencing discrimination or homo/transphobia in their genetic counseling sessions, with 6.12% of LGBQ+ patients endorsing discrimination and 24.1% of trans+ patients reporting this. Over half of genetic counselors reported receiving training in LGBTQ+ healthcare and the majority reported comfort with providing care to LGBTQ+ patients. However, discrepancies between patient-reported experiences and genetic counselors’ descriptions of their care for the LGBTQ+ population warrant further research and suggest additional training or changes in practice may be necessary. Clinical and professional implications are highlighted, and suggestions for how to facilitate disclosure in genetic counseling sessions are included.