ELSIcon2022 • Paper • May 31, 2022
Individuals with diverse gender identities are being newly recognized as a significant proportion of the population seeking genetic counseling in the U.S. Yet, transgender and non-binary individuals are underrepresented in genetic counseling 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. These issues are particularly significant in the field of cancer genetic counseling, where gender diverse individuals with elevated cancer risk receive risk assessment, counseling, and referral to support based on risk figures and standards of care developed for presumed cisgender individuals. How gender diverse individuals with inherited cancer syndromes navigate the clinical and everyday challenges associated with their diagnoses is largely unknown to genetics providers, and this gap has implications for providers’ abilities to provide inclusive and appropriate care. In this paper, I will address this gap by presenting results from a ethnographic study exploring the lived experiences of gender diverse individuals with increased risk of cancer, focusing on how trans* identity affects perceptions and experiences of cancer risk management.