More than one-third of patients with breast or ovarian cancer or a family history of those diseases who also saw a genetic counselor did not pursue genetic testing for BRCA 1 or BRCA 2 mutations, according to data presented at the National Society of Genetic Counselors 33rd Annual Education Conference held September 17-20 in New Orleans.
The reasons for opting out of testing were varied and included not being the best candidate for testing (27%), testing was not clinically indicated (22%), personal reasons (17%), and inadequate insurance coverage (13%).
For the study, anonymous data on BRCA-related genetic counseling visits were collected from genetics providers in Michigan from 2008-2012. The study showed that while 10,726 patients (94.8% female) underwent genetic counseling, 3476 (32.4%) patients did not pursue genetic testing.
Untested individuals were less likely to have breast and/or ovarian cancer (P
<.01); less likely to be of Ashkenazi Jewish ancestry (P
<.01) and more likely to be female (P
<.01), the study showed.
“In a large proportion of these patients, genetic testing is not indicated,” Victoria M. Raymond, MS, CGC, lead author of the study and clinical instructor of internal medicine and certified genetic counselor with the University of Michigan Cancer Genetics Clinic, said in a statement. “In these instances, genetic counseling can help guide and reassure the patient and his or her doctor about the appropriate cancer screening and surveillance.”
A patient who does not have cancer, but has a strong family history—such as a mother or sister with cancer—is not considered a good candidate for testing. In those cases, the family member who has cancer should be tested first. If a genetic mutation is found in that cancer patient, the family member who does not have cancer should then be tested for that mutation.
Also, testing is not indicated in cases where it is unlikely the cancer was caused by a genetic mutation. For example, if an older woman with breast cancer had relatives who also got the disease at an older age, it is unlikely the cancer is inherited because one in eight women eventually get breast cancer.
However, in some cases testing would be recommended, but sometimes insurance coverage excludes genetic testing or requires a high copay, presenting a barrier for some patients.
In untested individuals who had breast and/or ovarian cancer, 22.2% listed inadequate insurance coverage as the primary reason testing was not pursued and 6.6% listed failure to meet Medicare criteria.
Additionally, 12.7% of the 2671 untested individuals with private insurance listed inadequate insurance coverage as the primary reason for not testing.
“Inadequate insurance coverage continues to be a barrier to appropriate genetic testing, even for those affected with cancer and those with private insurance,” the authors said