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

• Published in: Patient education and counseling 2025-02, Vol.131, p.108561, Article 108561
• Main Authors: Diez de los Rios de la Serna, Celia, Dowling, Maura, McNamara, Nichola, Ivory, John D., Hanhauser, Yvonne, Murphy, Meghan, Dean, Marleah
• Format: Article
• Language: English
• Subjects: BRCA; Cancer risk management; Decision-making; Family adjustment; Family communication; Hereditary cancer syndromes
• ISSN: 0738-3991; 1873-5134; 1873-5134
• DOI: 10.1016/j.pec.2024.108561

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. 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. 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. 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. 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. •People with hereditary cancer syndromes find difficulties communicating their carrier status to their children.•There is a lack of interventions from healthcare professionals to support these conversations from parents to children.•There is a need to plan interventions to support people who need guidance for these disclosure conversations.