Health insurance and discrimination concerns and BRCA1/2 testing in a clinic population

The discovery of the breast cancer genes BRCA1 and BRCA2 has afforded those who seek breast and ovarian cancer risk counseling the option of genetic testing. Concerns about cost, confidentiality, and the potential for discrimination, however, may prevent some women from pursuing genetic testing. To determine the impact of these concerns on BRCA testing, we studied a cohort of 384 patients presenting de novo to a Breast and Ovarian Cancer Risk Evaluation Program, between January 6, 1997 and March 13, 2000. Of the 184 individuals who were themselves primary candidates for testing, 106 (58%) underwent BRCA1/2 sequencing. Of the 78 eligible patients who declined testing, 48 cited concerns about cost and insurance discrimination as their reason. On the basis of the number of positive results ascertained in the tested group, we estimate that approximately half of patients declining testing because of insurance coverage concerns would be positive for a BRCA mutation. We were unable to document any experiences of test result-based discrimination, although there were other negative insurance-related experiences. We conclude that in a high prior-risk clinic population, approximately one-quarter of patients eligible for BRCA testing may decline because of concerns about cost, confidentiality, and discrimination. Our research provides evidence that these fears may be discrepant with the actual experiences of patients in high-risk clinics.