Disclosure and comfort during genetic counseling sessions with LGBTQ+ patients: An updated assessment

Abstract

Disclosure is the act of sharing a stigmatized identity, and members of the LGBTQ+ community make decisions related to disclosure multiple times throughout their life. Disclosure in medical settings can impact 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 attended a genetic counseling session and 91 genetic counselors completed online surveys. The patient survey assessed for disclosure behaviors, experiences of discrimination, and comfort in genetic counseling sessions. The counselor survey evaluated comfort with the LGBTQ+ population in a counseling setting, whether counselors facilitate disclosure in sessions, and whether counseling is tailored 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 experiencing discrimination and 24.1% of trans+ patients reporting discrimination. 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.

A qualitative study exploring LGBTQ genetic counseling students' relationships with peers and faculty in graduate school

“…To limit the minority tax on LGBTQ students, program faculty should intentionally incorporate topics related to LGBTQ identities in their curricula, along with other diversity, equity, and inclusion topics. Genetic counselors have reported desiring more training about LGBTQ topics (Berro et al, 2019;Nathan et al, 2019;Zayhowski et al, 2019) and curricula about being culturally respon- families (Valentine et al, 2023), and genetic counselors should not be assumed to be straight and cisgender, such as was described by participants in this study. Identity topics should not be approached from a deficit model, where people of minoritized groups are viewed as different because their culture or identity is "deficient" compared with those in a majority group (Song & Pyon, 2008).…”

“…Environments that are not safe or comfortable for identity disclosure can negatively impact LGBTQ students' training. Valentine et al (2023) showed that, from the patient perspective, genetic counselors do not routinely engage in practices that allow for LGBTQ identity disclosure in genetic counseling sessions, despite genetic counselors' reporting that they believe that their patients are comfortable disclosing their identities to them; a similar pattern may apply with students in graduate school. Prior studies have shown that medical students who chose not to disclose their identity to faculty members felt that they were more restricted or inhibited when forming strong relationships with them and lacked mentorship during their programs, creating inequities within the training environment (Dimant et al, 2019; Toman, 2019).…”

“…Genetic counselors have reported desiring more training about LGBTQ topics (Berro et al, 2019; Nathan et al, 2019; Zayhowski et al, 2019) and curricula about being culturally responsive and recognizing one's own values and biases are in alignment with the Practice‐Based Competencies for Genetic Counselors put forth by the Accreditation Council for Genetic Counseling (2019). As a baseline, case examples and standardized patients should include individuals who are not cisgender or part of heteronormative nuclear families (Valentine et al, 2023), and genetic counselors should not be assumed to be straight and cisgender, such as was described by participants in this study. Identity topics should not be approached from a deficit model, where people of minoritized groups are viewed as different because their culture or identity is “deficient” compared with those in a majority group (Song & Pyon, 2008).…”

“…Environments that are not safe or comfortable for identity disclosure can negatively impact LGBTQ students' training. Valentine et al (2023) showed that, from the patient perspective, genetic counselors do not routinely engage in practices that allow for…”

“…Moreover, a study of genetic counselors and genetic counseling students demonstrated an overarching implicit bias against homosexuality, although less implicit bias compared with the general US population (Nathan et al, 2019). Recent research has shown that although genetic counselors report being comfortable with providing LGBTQ patients care, LGBTQ patients report experiencing discrimination in genetic counseling sessions (Valentine et al, 2023). The genetic counseling profession must examine how to better foster inclusive and safe environments for the growing LGBTQ community.…”