Intra-familial communication of hereditary breast and ovarian cancer information in Italian women

Abstract

Abstract Background Genomic testing expansion for hereditary breast and ovarian cancer (HBOC) comes with an increased need for genetic counseling and intra-familial communication. Genetic counseling can play an important role in facilitating intra-familial communication and relationships, thus avoiding misunderstandings within the family. Methods We conducted a cross-sectional, multicenter study including 252 Italian women, using a questionnaire divided in two sections; the first to be filled after the pre-test counseling and the second after receiving the genetic test results. This aimed at assessing the factors influencing the disclosure of genetic information for HBOC, family members that probands share genetic information with, and the degree of understanding of the information received by the counselees during genetic counseling. Results Women were accompanied to the counseling more by their husbands/partners. Among those with a positive test result, 49% shared it with their offspring and 27 % with their husband/partner. Younger women, those living with their husbands/partners and those who described family communication as open/deep had a higher probability of being accompanied at the genetic counseling and discuss about it with relatives. Being alone at the genetic counseling was significantly associated to non-existing familial relationship (p = 0.003) and problematic intra-familial communication (p = 0.005). Sincere or joyful familial relations were associated with the decision to undergo genetic testing as a responsibility towards relatives. Women had a good understanding of the counseling (mean score 9.2 in a scale1-10). Discussion Genetic counseling providers should consider that the disclosure of genetic information does not depend only on the clarity of the information provided, but also on pre-existing intra-familial communication and relationship, family structure and marital status, indicating the need of a personalized approach based on these factors. Key messages The disclosure of genetic information from women to their relatives in the case of HBOC is a complex relational process, which poses practical and ethical problems for individuals and families. Genetic counseling providers should be able to advice their patients on the importance of genetic information disclosure, considering, also, the pre-existing intra-familial communication dynamics.