A University of South Florida-led research collaboration with Aetna, the American Cancer Society and the national non-profit Facing Our Risk of Cancer Empowered (FORCE) today published results from a national study identifying factors and outcomes associated with the use of genetic counseling and testing services for hereditary breast and ovarian cancer in the community setting. The work is reported in the Journal of the American Medical Association — Oncology and indicates a significant opportunity to increase genetic counseling in community care.
The investigative team for the ABOUT Study (American BRCA Outcomes and Utilization of Testing Study), led by principal investigator Rebecca Sutphen, MD, professor of genetics at the USF Health Morsani College of Medicine, analyzed data from a consecutive series of women whose health care providers requested BRCA testing through the national health insurer, Aetna, over a one-year period.
The guidelines of multiple medical professional societies and health authorities indicate that genetic counseling should precede a decision to undergo BRCA testing.
Despite this guidance, only 36.8 percent of the 3,874 female participants in this study reported receiving genetic counseling from a genetics clinician before BRCA genetic testing. Importantly, those who received this service demonstrated greater knowledge about BRCA, including risk factors and treatment options. They also expressed greater understanding of and satisfaction with the information they received prior to testing. The proportion of women receiving the service varied significantly based on the specialty of the provider ordering the test, with the lowest rates among Obstetrician/Gynecologists (12.3 percent).
“The ABOUT Study offers a rare opportunity to study the self-reported experiences of women undergoing testing in the community setting where most people receive their care. Although we found that most women did not receive genetic counseling by a genetics professional, this is a gap in services that can be addressed,” Sutphen said.
Genetic counseling to support BRCA testing is a preventive service that is covered with no out-of-pocket costs for most women with a family history of breast or ovarian cancer.
“Comprehensive genetic counseling about BRCA mutation testing is important for individuals to understand their cancer risk. The information obtained from genetic counseling empowers individuals as well as current and future generations of their families to make informed decisions about screening, risk reduction, and treatment options,” said Joanne Armstrong, MD, senior medical director and head of Women’s Health for Aetna.
The study done by University of South Florida (USF Health).
