Community, family and patient engagement with hereditary cancer genetic testing: a qualitative study from Peru

Hereditary cancer syndromes (HCS), driven by germline (likely) pathogenic variants, account for 5–10% of cancers worldwide. In Peru, genetic testing is available through private laboratories and, for vulnerable populations, free of charge at the National Cancer Institute. Little is known about how patients, families and communities in Latin America engage with HCS genetic testing and diagnosis, limiting to inform community and patient engagement in hereditary cancer research and services. This phenomenological qualitative study, conducted in line with Standards for Reporting Qualitative Research (SRQR), followed a previous Peruvian HCS cohort. From 19 eligible individuals, 15 participated in semi‑structured, in‑person home interviews. Audio‑recorded data were transcribed verbatim, pseudonymized and analysed using reflective thematic analysis to identify themes related to engagement with testing, follow‑up care and support. Participants (median age 31 years, range 27–53; 80% female; 33.3% with personal cancer history) described four interconnected themes: (1) diagnosis as shock and fear, but also a catalyst for faith and family connection; (2) cancer’s physical and mental toll disrupting daily life; (3) marked gaps in financial and institutional support, with families and neighbourhoods acting as primary support networks; and (4) “staying strong” through faith, responsibility to relatives and forward‑looking resilience. These dynamics shaped how participants accessed and remained engaged with genetic services, surveillance and potential research. Peruvian HCS patients navigate genetic testing and diagnosis through faith, family networks and community support in the context of pronounced health‑system barriers. Co‑designing hereditary cancer services and research with patients, families and communities may strengthen engagement, improve cascade testing and surveillance, and advance equitable cancer prevention across Latin America.