Most women aren’t receiving genetic counseling after BRCA testing

The majority of women who undergo testing for BRCA gene mutations do not receive genetic counseling by a licensed genetics professional to coincide with the testing, according to a recent article in JAMA Oncology.

Researchers from the University of South Florida Morsani College of Medicine looked at data of more than 11,000 women who underwent BRCA testing between December 2011 and December 2012. Among those women, more than 63 percent reported that they did not receive genetic counseling from a genetics professional. Most said it was because their clinician didn’t recommend it.

“These findings demonstrate important gaps in clinical genetics services,” study authors wrote in the article. “Recently mandated coverage of genetic counseling services as preventive services without patient cost sharing should contribute to improving clinical genetics services and associated outcomes in the future.”

The roughly 33 percent of women who did receive genetic counseling were more knowledgeable about BRCA mutations and had a higher level of understanding about what their test results meant.

Experts believe that genetic counseling can help provide the knowledge patients need to make medical decisions that are right for them.

“Receiving genetic counseling prior to genetic testing — by a health care specialist trained in genetics — is vital to a person’s understanding of their genetic testing results and medical management options moving forward,” says Melody Perpich, genetic counselor at Advocate Illinois Masonic Medical Center in Chicago. “Also, a genetic counselor can guide a woman through the genetic testing decision-making process, and help her determine the pros and cons of testing.”

The study also found high rates of inappropriate tests ordered and tests done of women without a personal history of cancer.

“These women need to understand the limitations of testing unaffected individuals,” Perpich says. “Women without cancer who test negative for BRCA or other gene mutations — without a known mutation identified in the family — may still be at increased risk for cancer and can qualify for more extensive breast cancer screenings, such as breast MRI.”

Not having a formal cancer risk assessment and interpretation of test results by a provider trained in genetics can give a patient false reassurance, Perpich adds.

BRCA1 and BRCA2 gene mutations increase a woman’s risk for breast and ovarian cancers.

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