“Prepared to Live with the Unknown”: Patients’ Experiences with Uncertainty when Making Decisions about Learning Incidental Genomic Sequencing Results

Abstract

Aim: To explore how adults with a history of cancer perceive, appraise and manage uncertainty when deciding whether or not to learn incidental results (IR) from genomic sequencing (GS). Methods: Semi-structured interviews were conducted with participants after selecting but before receiving IR. Transcripts were analyzed thematically using constant comparison. Results: Fifteen participants were interviewed (12/15 women, on average 56 years old). Participants experience substantial uncertainty related to their cancer, “a grey cloud hanging over my head.” Cancer uncertainty helped participants accept uncertainty related to IR, despite generally disliking uncertainty. Cancer experiences heightened the perceived value of learning predictive health information. Participants anticipated managing IR-related uncertainty through strategies including information seeking, support from healthcare providers, or trying not to focus on uncertainty. Conclusions: Cancer uncertainty fostered tolerance of uncertainty related to IR, and cancer experience heightened the perceived value of IR. These findings could inform genetic counseling for IR.