ATTITUDES OF 47 MOTHERS OF PEDIATRIC ONCOLOGY PATIENTS TOWARD GENETICTESTING FOR CANCER PREDISPOSITION

Purpose: To assess attitudes toward testing for cancer susceptibility genes, we interviewed mothers of pediatric oncology patients about the ir cancer causation theories, interest in hypothetical predisposition testing for themselves and their healthy children, and anticipated imp act of testing. Patients and Methods: The subjects were 47 mothers of two or more living children, one of whom was 6 to 24 months postdiagno sis of cancer. Potential risks and benefits of hypothetical generic pr edisposition testing for cancer susceptibility were described. A semis tructured interview assessed the following: (1) recall of discussions with the pediatric oncologist about the possible role of heredity in c ausing the child's cancer; (2) mothers' personal theories of the etiol ogy of their child's cancer; (3) family cancer history; (4) interest i n genetic predisposition testing for themselves and unaffected (cancer -free) children; and (5) expected sequelae of testing. Results: If gen etic cancer predisposition tests were available, 51% of mothers would test themselves and 42% would test healthy children, even with no medi cal benefit. With established medical benefit, an additional 36% of mo thers would seek testing for themselves and another 49% would test the ir healthy children. Interest in cancer predisposition testing among m others extended far beyond those with significant family histories of cancer. Most mothers would consider minor children's wishes in the dec ision about testing and would tell children under age 18 their test re sults. Conclusion: As increasing numbers of cancer susceptibility are identified, parents of pediatric oncology patients may be receptive to opportunities to test themselves and their healthy children. Counseli ng will be important to aid in decisions about testing. Research is es sential to evaluate the long-term impact of predisposition testing. (C ) 1996 by American Society of Clinical Oncology.