Disclosure to the family of breast/ovarian cancer genetic test results: Patient's willingness and associated factors

Abstract

Informed probands are key actors for disclosing genetic information to their relatives when a mutation has been identified in the family. The objectives were to study women's attitudes towards the family disclosure of positive breast cancer genetic testing results and to determine the predictive factors of the diffusion patterns observed. A national multi-center cross-sectional survey was carried out at five French cancer genetic clinics during a 1-year period. Self-administered questionnaires were completed after the consultation by 84.5% (398/471) of women attending breast cancer genetic clinics for the first time. Among the 383 respondents who had at least one living first-degree relative to inform, 8.6% would inform none, 33.2% would inform at least one of them, and 58.2% would inform all of them. The sibship would be the most frequently informed blood relatives, sisters in 86.9% and brothers in 79% compared with mother in 71.4%, children in 70.4%, and father in 64.9%. Women of the family would be more frequently informed than men (P < 0.05). After multivariate adjustment, age, the fact to be affected by cancer, the number of daughters, and the emotional disturbance due to cancer in a close relationship were the main determinants (P < 0.05) of the diffusion patterns observed. The first step of the relatives' attendance to genetic counseling and the proband's willingness to disclose breast cancer genetic tests results was high in this study and was clearly dependent on the women's personal and emotional characteristics.

The Effect of BRCA Gene Testing on Family Relationships: A Thematic Analysis of Qualitative Interviews

“…Results are also frequently relayed to a spouse or partner (Julian-Reynier et al, 2000), although further comment on this is out of the scope of this review.…”

“…Individuals receiving conclusive genetic testing results were found 6.25 times more likely to disclose their test result than individuals receiving an inconclusive result (Claes et al, 2003). Also, a personal history of cancer or prophylactic mastectomy was found to correlate with a higher rate of disclosure to family members (Julian-Reynier et al, 2000;Bradbury et al, 2007). Distant relatives were found more likely to receive genetic information in families having a greater number of deceased family members, while tellers close to a family member with cancer were found less likely to disclose positive results to their own mother (Claes et al, 2003;Julian-Reynier et al, 2000).…”

“…Also, a personal history of cancer or prophylactic mastectomy was found to correlate with a higher rate of disclosure to family members (Julian-Reynier et al, 2000;Bradbury et al, 2007). Distant relatives were found more likely to receive genetic information in families having a greater number of deceased family members, while tellers close to a family member with cancer were found less likely to disclose positive results to their own mother (Claes et al, 2003;Julian-Reynier et al, 2000). Additionally, brothers were more likely to be informed if the mutation came from the paternal side of the family than if it was passed from the maternal side (Patenaude et al, 2006).…”

“…Younger women were found more likely to disclose information to their distant relatives (Claes et al, 2003) and also to their mother (Claes et al, 2003;Julian-Reynier et al, 2000;Patenaude et al, 2006) than are older women. -Reynier et al (2000) suggested that the latter observation might be because older women are trying to protect their (typically older) mothers from disturbing information or because they do not perceive the information as useful for their mothers.…”

“…They also point out that younger women tend to have younger mothers who could still be at significant hereditary cancer risk themselves (Patenaude et al, 2006). Older women are more likely to disclose test results to their own children (Julian-Reynier et al, 2000), likely because their children are typically older and closer to imminent genetic risk.…”