Universal tumor screening for lynch syndrome: patient perspectives and preferred model of consent

Abstract

Lynch Syndrome (LS) is associated with an increased risk of colorectal (CRC) and other cancers. High risk individuals can be detected by testing all CRC tumors for findings such as microsatellite instability suggestive of LS, known as ‘universal tumor screening’. Patient interest in screening and preferences for consent remain largely unknown. To explore the perspectives of CRC patients about universal tumor screening, a postal survey was administered to patients in NL diagnosed with CRC from 2014-2016 (n=698). Response rate was 47.6%. A large majority of patients (81.4 %) were willing to have their tumors tested if such a program were available in NL. Nearly all were willing to discuss their test result with family members and healthcare professionals, and the majority (62.6%) preferred informed consent be obtained prior to screening. While patients were supportive of tumor screening to identify LS, they expected some form of consent to be obtained, contrary to current practice across Canada. Findings can help guide the implementation of a universal tumor screening program in NL.