Cancer Risk Information Sharing: The Experience of Individuals Receiving Genetic Counseling for BRCA1/2 Mutations

Abstract

Genetic counseling and testing for familial cancer is a unique context for the communication of risk information in the family. This study utilized a theoretical framework based on the family systems perspective to understand intrafamilial cancer risk communication patterns in the Ashkenazi Jewish population. Individuals (n = 120) at an elevated risk for BRCA1/2 mutations were included. Change in communication patterns over time was assessed using McNemar tests. Associations with communication patterns were assessed with multivariable logistic regression. Overall, the proportion of participants encouraged by others significantly (p < .001) increased from before to after genetic counseling. A higher proportion of participants were encouraged by female family members compared with male family members. Participants who were older, had no personal history of cancer, and had a higher cancer risk perception were more likely to be encouraged by others for genetic testing. Participant’s intent to encourage family members for genetic testing from before counseling to after receipt of genetic test results decreased by 16.7%. Participants who had no personal history of cancer and had informative test results for a BRCA1/2 mutation were more likely to encourage other family members for genetic testing. In addition, qualitative findings suggested that closeness among family members, concern for family, especially future generations, and cognizance about cancer risk facilitate information sharing and encouragement for genetic testing. Our findings indicate that intrafamilial cancer risk communication varies with the structure of family relationships and that genetic counseling can play an important role in improving intrafamilial cancer risk communication.

Funding

This study was supported by a grant from the National Cancer Institute (R03 CA128459-01, Kelly, PI). The authors declare that they have no conflict of interest.

Notes

¹ All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000. Informed consent was obtained from all patients for being included in the study. The authors confirm all patient/personal identifiers have been removed or disguised so the patient/person(s) described are not identifiable and cannot be identified through the details of the story.

Additional information

Funding

This study was supported by a grant from the National Cancer Institute (R03 CA128459-01, Kelly, PI). The authors declare that they have no conflict of interest.