Psychosocial Issues in Inherited Breast Cancer Syndromes
What People Bring to Genetic Testing: Impact of Risk Perception, Health Beliefs, and Personality Characteristics
The emerging literature in this area suggests that risk perceptions, health beliefs, psychological status, and personality characteristics are important factors in decision-making about breast/ovarian cancer genetic testing. Many women presenting at academic centers for BRCA1/BRCA2 testing arrive with a strong belief that they have a mutation, having decided they want genetic testing, but possessing little information about the risks or limitations of testing. Most mean scores of psychological functioning at baseline for subjects in genetic counseling studies were within normal limits. Nonetheless, a subset of subjects in many genetic counseling studies present with elevated anxiety, depression, or cancer worry.[43,44] Identification of these individuals is essential to prevent adverse outcomes. In a study of 205 women pursuing genetic counseling, interactions among cancer worry, breast cancer risk perception, and perceived severity of having a breast cancer gene mutation were found such that those with high worry, high breast cancer risk perception, and low perceived severity were twice as likely to follow through with BRCA1/BRCA2 testing than others.
A general tendency to overestimate inherited risk of breast and ovarian cancer has been noted in at-risk populations,[46,47,48] in cancer patients,[47,49,50] in spouses of breast and ovarian cancer patients, and among women in the general population,[52,53,54] but underestimation of breast cancer risk in higher-risk and average-risk women also has been reported. This overestimation may encourage a belief that BRCA1/BRCA2 genetic testing will be more informative than it is currently thought to be. There is some evidence that even counseling does not dissuade women at low to moderate risk from the belief that BRCA1 testing could be valuable. Overestimation of both breast and ovarian cancer risk has been associated with nonadherence to physician-recommended screening practices.[56,57] A meta-analysis of 12 studies of outcomes of genetic counseling for breast/ovarian cancer showed that counseling improved the accuracy of risk perception.