A scoping review of parents’ disclosure of BRCA1/2 genetic alteration test results to underage children

Background: Individuals with BRCA1/2 mutations have a notably higher than average lifetime risk of developing cancer as adults. Some parents with BRCA1/2 mutations wish to share this information with their children, yet they struggle to know how, when, and what information to share. Objective: The objective of this review was to identify what communication strategies/interventions exist for parents communicating their BRCA1/2 status to their minor children, and what communication interventions do healthcare professionals use to support parents’ disclosure process. Methods: Scoping review on six databases search for studies with parents and/or healthcare professionals’ interventions on supporting communication from parents to children. The review aligned PRISMA guidelines for scoping reviews and used the PAGER recommendations to guide charting and reporting. Results: 22 articles published from 2001 to 2020 were included. Multiple facilitators/motivators of disclosure, how and where parents disclosed, reactions to disclosure were identified. Also, there were no healthcare professionals’ interventions in the disclosure process found. Conclusions: The review summarizes research on parents’ disclosure of their BRCA1/2 status to their underage children and demonstrates a paucity of communication interventions for guiding parents in this difficult process. Parents experience many obstacles communicating the results to their children. Practice implications: These findings equip healthcare professionals in their efforts to develop and test interventions which support the communication of genetic risk information. Furthermore, it is evident there is a need for more research to understand how the disclosure process occurs in the families.