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Research

Two-thirds of women getting genetic testing for breast cancer not getting proper prep

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A new study published in the Journal of American Medical Association Oncology has found that less than half the women who were tested for the “breast cancer gene” received appropriate counseling and education beforehand. Approximately 3-5 percent of breast cancers and 10 percent of ovarian cancers are caused by the inherited BRCA1 or BRCA2 genes, which can be detected with genetic testing. Initial counseling is an important first step recommended by the U.S. Preventive Services Task Force and professional medical societies, according to Joanne Armstrong, M.D., one of the study’s authors and senior medical director and head of Women’s Health for Aetna.

“Genetic testing shouldn’t be taken lightly. It can reveal a lot of information that without the proper context can be unsettling and scary for someone. It is critical to understand risk and strategies to lower risk for inherited breast and ovarian cancer. That’s why the first step in the genetic testing process needs to be a conversation about the individual’s own personal risk, their family risk, and what the results of the testing, either negative, positive or indeterminate, could mean for them,” Armstrong said.

The American BRCA Outcomes and Utilization of Testing (ABOUT) Study analyzed data from nearly 4,000 women whose health care providers requested BRCA testing through Aetna over a one-year period. The results, released in October 2015, indicate a significant opportunity to increase genetic counseling in community care.

“The study suggests an increase in education could decrease anxiety and reduce unnecessary testing associated with inherited breast and ovarian cancer. Genetic counseling as a first step can help accomplish all of these,” Armstrong noted.

Led by the University of South Florida with support from the Aetna Foundation, the American Cancer Society and Facing Our Risk of Cancer (FORCE), the study found that only 36.8 percent of patients received genetics counseling from a genetics clinician before receiving BRCA (BReast CAncer Susceptibility Gene) testing.  The primary reason? It wasn’t suggested by the doctor who ordered the test.

Another notable finding of the research was that women sent for genetic testing but not genetic counseling before testing were two to three times more likely to not meet the guidelines for testing. They were also much less likely to understand the role of BRCA in cancer genetics and how it related to their own health and decision making.

“Until recently, genetic testing was ordered predominately by genetics trained doctors within academic medical centers. And they have traditionally provided genetic counseling before testing,” Armstrong said. “But with laboratories marketing and making genetic tests easily accessible to women and their doctors, many community physicians are now sending their patients for testing. As this study found, many of these women are being tested without any real understanding of what the results could mean.”

Genetic counseling can be a very useful tool for helping individuals and their families understand their cancer risk. Armstrong noted it can also prompt important family conversations about health history. “With more information and education, anyone who is at risk will be better equipped to make informed decisions about screening, risk reduction and treatment options.”

 

Editor’s note: 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.  Aetna was a sponsor of this research.