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

Am J Med Genet. 2000 Sep 4;94(1):13-8. doi: 10.1002/1096-8628(20000904)94:1<13::aid-ajmg4>3.0.co;2-t.


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.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adult
  • Breast Neoplasms / psychology*
  • Female
  • Genetic Testing / psychology*
  • Health Status
  • Health Surveys
  • Heterozygote
  • Humans
  • Middle Aged
  • Multicenter Studies as Topic
  • Ovarian Neoplasms / psychology*
  • Social Class
  • Truth Disclosure*