'Multiple weights off my chest': Trans and Nonbinary Experiences of Hereditary Cancer Care

Individuals with diverse gender identities, whose gender identity or expression differ from their sex assigned at birth, are being newly recognized as a significant proportion of the population seeking hereditary cancer care. Despite this, transgender and non-binary individuals are underrepresented in cancer research and underrepresented in research on LGBTQI+ health more broadly. This lack of representation in research creates a cycle of exclusion from the production of medical knowledge, which in turn affects the quality and equity of care received by gender diverse people. This is particularly problematic in the field of cancer genetic counseling, where risk assessment and counseling are based on standards developed for presumed cisgender individuals. To address this gap, we conducted a qualitative study with 20 transmasculine and nonbinary adults with elevated cancer risk, exploring their experiences with hereditary cancer care and their visions for gender-affirming care. Participants discussed resonances between top surgery and risk-reducing mastectomy, as well as specific care experiences that were affirming or dysphoric. They also offered recommendations for providers to better support gender diverse patients, including using mindful language, partnering in difficult decisions, and conveying allyship. Our study sheds light on the unique needs and experiences of gender diverse individuals in cancer genetic counseling and highlights the importance of including these individuals in research to improve the quality and equity of care.

Kellan Baker, PhD, MPH, MA – Executive Director and Chief Learning Officer, Whitman-Walker Institute, Whitman-Walker Health; Hannah Davidson, BA – Genetic Counseling Student, Health, Behavior, and Society, Johns Hopkins Bloomberg School of Public Health; Leila Jamal, ScM, PhD, CGC – Associate Director for Cancer Genomics, Genetics Branch, Center for Cancer Research, National Cancer Institute; Jill Owczarzak, PhD – Associate Professor, Health, Behavior, and Society, Johns Hopkins Bloomberg School of Public Health