Table 13. Predictors Associated with Uptake of Genetic Testing (GT) continued...
Apprehension about the impact of the test result was a more important factor in the decision to decline testing than were concrete burdens such as time required to travel to a genetics clinic and time spent away from work, family, and social obligations. In 15% (n = 31) of individuals from 13 hereditary breast and ovarian cancer families who underwent genetic education and counseling and declined testing for a documented mutation in the family, positive changes in family relationships were reported—specifically, greater expressiveness and cohesion—compared with those who pursued testing.
Genetic counseling and testing in children
Testing for BRCA1/2 mutations has been almost universally limited to adults older than 18 years. The risks of testing children for adult-onset disorders such as breast and ovarian cancers, as inferred from developmental data on children's medical understanding and ability to provide informed consent, have been outlined in several reports.[50,51,52,53]
Studies suggest that persons who have undergone BRCA1/2 genetic testing or who are adult offspring of persons who have had testing are generally not in favor of testing minors.[54,55] Although the data are limited, research suggests that males, mutation noncarriers, and those whose mothers did not have personal histories of breast cancer may be more likely to favor genetic testing in minors in general. Of those who had minor children at the time the study was conducted, only 17% stated a preference for having their own children tested. Concerns regarding testing of minors included psychological risks and insufficient maturity. Potential benefits included the ability to influence health behaviors.
No data exist on the testing of children for BRCA1/2 mutations, although some researchers believe it is necessary to test the validity of assumptions underlying the general prohibition of testing children for genetic mutations associated with breast and ovarian cancers and other adult-onset diseases.[56,57,58] In one study, 20 children (aged 11–17 years) of a selected group of mothers undergoing genetic testing (80% of whom previously had breast cancer and all of whom had discussed BRCA1/2 testing with their children) completed self-report questionnaires on their health beliefs and attitudes toward cancer, feelings related to cancer, and behavioral problems. Ninety percent of children thought they would want cancer risk information as adults; half worried about themselves or a family member developing cancer. There was no evidence of emotional distress or behavioral problems.