Translational Medical Research Commons^™

Communicating Unexpected Genetic Information With Family Members: A Multimethod Study Of Secondary Findings Recipients, Julie Chevalier Sapp

Doctor of Philosophy in Translational Health Sciences Dissertations

Background: Medically-actionable secondary genomic findings (SF) can be life- preserving or life-prolonging for recipients but this benefit can only extend to family members if this information is shared with relatives. How SF recipients communicate this important genetic information with relatives, barriers and facilitators to this process, and SF recipients’ lived experiences in communicating about their results over time remain largely unknown. Family communication is required for relatives of SF recipients to access cascade testing and the potential benefits of enhanced screening and management. Applying behavioral and implementation science theories and providing rich and deep descriptions of SF recipients’ lived experiences …