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Most Women Getting Genetic Testing Don’t Get Counseling From Genetics Professional

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A study has found that only about a third of women who undergo testing for an abnormal BRCA1 or BRCA2 gene received counseling from a trained professional genetic counselor before they were tested.

The study was published online on Oct. 1, 2015 by JAMA Oncology. Read the abstract of “Utilization and Outcomes of BRCA Genetic Testing and Counseling in a National Commercially Insured Population: The ABOUT Study.”

Most inherited cases of breast cancer are associated with one of two abnormal genes: BRCA1 (BReast CAncer gene one) or BRCA2 (BReast CAncer gene two).

Women with a BRCA1 or BRCA2 genetic mutation:

  • have up to a 72% lifetime risk of developing breast cancer
  • have a much higher-than-average lifetime risk of ovarian cancer; estimates range from 17% to 44%

U.S. guidelines say that BRCA testing should be considered when:

  • many women in a family have been diagnosed with breast and/or ovarian cancer, particularly if the women were younger than 50 when diagnosed
  • some women in a family have been diagnosed with cancer in both breasts
  • there is both breast and ovarian cancer in a family
  • men in a family have been diagnosed with breast cancer
  • there is breast cancer in a family and either male relatives on the same side of the family have been diagnosed with prostate cancer at a young age or relatives on the same side of the family have been diagnosed with gastrointestinal cancers, such as pancreas, gall bladder, or stomach cancer
  • a family is of Ashkenazi (Eastern European) Jewish descent

The ABOUT (American BRCA Outcomes and Utilization of Testing) study was a collaboration between the University of South Florida, the American Cancer Society, Aetna, and FORCE (Facing Our Risk of Cancer Empowered).

The researchers identified 11,159 women whose doctors ordered BRCA testing between December 2011 and December 2012. Aetna then mailed study packet questionnaires to all the women; 34.7% (3,874 women) completed the questionnaires.

The researchers analyzed information from 3,628 women who completed the questionnaires. Of these women:

  • 69% were non-Hispanic whites (2,502 women)
  • 81.4% were college educated (2,953 women)
  • 75.8% were married (2,751 women)
  • 55.4% had relatively higher incomes (2,011 women)
  • 16.4% didn’t meet testing criteria (596 women)

Most of the women -- about 53.3% -- had no personal history of breast or ovarian cancer:

  • 43.3% had a personal history of breast cancer
  • 2.9% had a personal history of ovarian cancer
  • 0.5% had a personal history of breast and ovarian cancer

Abnormal BRCA1 or BRCA2 genes were found in 161 of the women (5.3%) who had genetic testing.

Only 1,334 women (36.8%) said they received genetic counseling from a professional genetics counselor before they had genetic testing.

The rates of women who received counseling from a professional genetics counselor varied depending on the specialty of the doctor who ordered the testing; women whose testing was ordered by obstetrician/gynecologists had the lowest rates of professional genetics counseling.

The most common reason the women gave for not receiving professional genetics counseling was that their doctor didn’t recommend it.

Women who did receive professional genetics counseling were more informed about abnormal BRCA genes, including risk factors and treatment options. These women also were more satisfied with the information they received before they had genetic testing.

"Comprehensive genetic counseling about BRCA mutation testing is important for individuals to understand their cancer risk,” said Joanne Armstrong, M.D., senior medical director and head of Women's Health for Aetna, who was the lead author of the study. “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."

If you and/or some of your family members have been diagnosed with breast, ovarian, or prostate cancer, you may be interested in the possibility of genetic testing. Meeting with a professional genetic counselor first can help you figure out the connection between your family’s genes and your risk of disease and whether genetic testing is right for your unique situation.

To find a professional genetic counselor who specializes in family-related cancer risk, talk to your doctor or check with the hospitals and cancer centers in your area. The National Society of Genetic Counselors also has an online tool to help you find a genetic counselor in your area.

For more information on BRCA1 and BRCA2 testing and counseling, visit the Genetic Testing pages.

Editor’s Note: This article was updated on Jan. 24, 2019, with updated information on cancer risk associated with BRCA mutations.

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