Psychological and social determinants of women's decisions to undergo genetic counseling and testing for breast cancer

This study examined the demand for breast cancer genetic testing and counse ling among Canadian women diagnosed with breast cancer under the age of 50, together with some of the factors predicting both their intentions to be t ested and the degree to which they act on their intentions. Participants we re 110 women under the age of 50 and comprised of two groups: 1) women diag nosed with breast cancer (BC, n = 60); and 2) an index group of unaffected women from the general population (GP, n = 50). All participants completed a survey that addressed family history of breast and other cancers, demogra phic variables, knowledge and attitudes about breast cancer, and genetic te sting. Members of the BC group were offered genetic counseling and testing for BRCA1 and BRCA2 free of charge. Overall, 60% of participants indicated they would like the test, and 40% either did not want it or were uncertain. Seventy-two percent of women in the BC group wanted to be tested. Of these , only 49% had actually contacted the genetic counselor about testing at fo llow-up 3-15 months later. Intention to be tested was associated with prese nce of breast cancer, greater perceived benefits of testing, fewer perceive d 'costs' of testing, and higher levels of concern about the risk of relati ves developing breast cancer. Actual arranging to meet with the genetic cou nselor among women in the BC group was associated with fewer perceived cost s of having the test. Results suggest a moderate level of interest in gene testing, though intention to be tested may not translate into actual uptake . Women who do choose to have the test may believe the potential 'costs' of using this new genetic technology to be relatively few. This has implicati ons for genetic counselors in terms of providing balanced and complete info rmation to women considering genetic testing for breast cancer susceptibili ty.