Transgender patients’ perspectives on their cancer genetic counseling experiences

Transgender (trans) individuals face many forms of discrimination in accessing health care, including lack of provider knowledge and denial of services. Barriers specific to the cancer setting include limited availability of information concerning cancer management and its potential impact on gender affirmation therapies and minimal training for providers regarding inclusive practices for the trans population. The limited research about the experiences of cancer genetic counseling for trans patients has investigated exclusively the perspective of the provider, not the patient. This constructivist grounded theory study sought to fill this gap in the literature by interviewing trans individuals who had undergone cancer genetic counseling. Participants were recruited through social media platforms, LGBTQ+ advocacy and cancer support groups, and the National Society of Genetic Counselors’ list serv. Six semi-structured interviews were conducted with participants focusing on their expectations and goals prior to the genetic counseling session, concerns during the session, and reflections on inclusive practices. Transcripts were coded and analyzed using a constant comparative approach and five themes emerged: (a) Anxiety for the consult, (b) Disruptions of familial relationships and emotional support systems, (c) Use of inclusive language during session, (d) Impact on gender affirmation journey, and (e) Lack of appropriate cancer risk information for trans patients. The results from this pilot study suggest that trans patients experience anticipatory anxiety before the genetic counseling appointment, particularly about the potential of a physical examination. They may be more likely to experience disrupted family relationships that impact access to family history information and support. Genetic counselors should utilize inclusive language both when referring to the patient and when discussing cancer risk. Finally, additional research is needed to provide more accurate cancer risk predictions for trans individuals.

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