Transgender patients’ perspectives on their cancer genetic counseling experiences

Abstract

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.

Genetic counseling for fetal sex prediction by NIPT: Challenges and opportunities

“…The majority of GCs in our study reported participating in training on inclusive care for TGD patients, and most GCs who had not experienced this training expressed interest in it. In combination with previous research, these data support the development of continuing education on inclusive clinical practices for TGD patients (Berro et al, 2020; Rolle et al, 2022; Ruderman et al, 2021).…”

“…Outside of societal perceptions of sex and gender, the language used by clinicians in prenatal clinics also influences the experiences of TGD people in healthcare. Members of the TGD community present to preconception and prenatal genetic counseling as well as obstetrics clinics for common indications unrelated to being transgender (Hoffkling et al, 2017; Rolle et al, 2022; Ruderman et al, 2021). TGD individuals who have used genetic counseling services have emphasized that one of the most important practices for gender‐inclusive language in clinical genetics is the appropriate use of ‘sex’ and ‘gender’ accurately as well as the provision of accurate education around these terms (Barnes et al, 2020; Rolle et al, 2022).…”

“…Several studies have partnered with TGD community members regarding best practices for inclusivity. In these studies, participants recommended that clinicians distinguish the terms ‘sex’ and ‘gender’ correctly and recognize this practice contributes to the creation of an inclusive clinical environment (Barnes et al, 2020; Rolle et al, 2022). Other work has elaborated on the sociohistorical context of sex and gender (Fausto‐Sterling, 2000, 2019; Monro et al, 2021); for this study, we refer to the interchangeable usage of sex and gender as incorrect or inaccurate.…”

From the patient to the population: Use of genomics for population screening

“…In addition, many underserved populations have limited guidelines on risk factors or treatment recommendations, making it difficult for clinicians to provide appropriate and effective care ( Hann et al, 2017 ). For example, there is a scarcity of guidelines for breast cancer screening in transgender individuals undergoing gender-affirming hormone therapy ( Berro et al, 2020 ; Rolle et al, 2021 ).…”

Creating Breast and Gynecologic Cancer Guidelines for Transgender Patients With BRCA Mutations

“…Indeed, several studies have noted that being able to use insurance for gender-affirming surgeries that are also risk-reducing was a primary motivation for undergoing genetic testing. 36,37 Furthermore, having a known BRCA1 or BRCA2 mutation may further reduce barriers to receiving surgery, such as circumventing the recommended psychological evaluation for gender-affirming care.…”