Unique social, identity, and community factors impact prophylactic surgery discussions in young adults who are BRCA1, BRCA2, and PALB2 positive.

The role of a cancer genetic counselor includes communication about emotions, thoughts, and decision-making related to prophylactic surgery. No prior study has fully evaluated the preferences of young adults who are BRCA1, BRCA2 (BRCA1/2), or PALB2 positive and their communication preferences on discussing prophylactic surgery in a genetic counseling session. We addressed this through semi-structured interviews with 13 individuals who were assigned female sex at birth, aged 18-30 during the time of genetic counseling, had seen a genetic counselor in the past 7 years, and tested positive for a BRCA1/2 or PALB2 pathogenic or likely pathogenic variant. Coding by two researchers and reflexive thematic analysis by three researchers was conducted to explore preferences of this population. Five major themes were constructed in analysis: (1) care personalized for life stage and identity; (2) personal and community factors impacting decision-making; (3) communication about gene-positive medical management; (4) healthcare system concerns; and (5) preferences for genetic counselor post-test counseling and follow-up. Young adult participants discussed that life-stage considerations such as body image, sexuality, and childbearing were important factors in their emotions and decision-making around prophylactic surgery, differing from previous literature on older populations. Participants desired more follow-up, better support and education around practical and emotional considerations for prophylactic surgery, and acknowledgment of personal and community factors that impacted them. Genetic counselors can personalize each visit to the patient and their needs by extensively contracting and bringing up topics that may be relevant and adjusting based on their preferences and values.