Study: Racial disparities in BRCA testing: Why?
Black women receive BRCA testing less frequently than white women. Why is that? Researchers thought the reason might be that black and white women see different health care providers. However, new research suggests that disparities in physician recommendations for testing are the cause: black women with breast cancer were less likely to receive physician recommendations for BRCA testing than white women with breast cancer. There is a need to ensure equity in physician testing recommendations for black women. (7/21/16)
Contents
At a glance | In-depth |
Findings | Limitations |
Guidelines | Resources |
Questions for your doctor |
STUDY AT A GLANCE
This study is about:
Uncovering the reasons why black women are less likely to receive testing than white women.
Why is this study important?
Black women have a similar, if not higher chance of carrying a BRCA mutation than non-Jewish white women. Yet studies show that fewer black women have BRCA testing. Researchers do not understand why this disparity exists.
Study findings:
- Black women with breast cancer were less likely than white women to have BRCA testing.
- About one-quarter of black women had BRCA testing, compared to almost one-half of white women.
- Black women with breast cancer were less likely to report positive attitudes about BRCA testing and were more likely to report negative attitudes.
- The care of black and white women with breast cancer is highly segregated across surgeons and oncologists.
- Oncologists and surgeons who cared for most black patients were younger and more likely to be female.
- A physician recommendation was strongly associated with BRCA testing. For unknown reasons, surgeons and oncologists were about 1.5 times less likely to recommend BRCA testing to their black patients than their white patients.
- Surgeons and oncologists who took care of more black patients did not differ in their attitude towards BRCA testing compared to surgeons and oncologists who saw more white patients.
- Characteristics (age, sex, U.S.-trained, employment type, and when they graduated from medical school) of surgeons and oncologists did not explain the racial disparity in BRCA testing recommendation between black and white women.
What does this mean for me?
This study suggests that that black women are less likely to get BRCA testing, possibly because their health care providers are less likely to recommend it, even though black women are as likely (if not more likely) to carry a BRCA mutation than white non-Jewish women. Health care providers should work to ensure that they communicate genetic service recommendations to all high-risk women, regardless of their race. Black women who are concerned about breast cancer in their families should ask their health care providers if genetic counseling or genetic testing is appropriate for them.
Posted July 21, 2016
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National Comprehensive Cancer Network guidelines regarding who should undergo genetic counseling and testing recommend speaking with a genetics expert about genetic testing if you have been diagnosed with breast cancer and any of the following apply to you:
- You have a blood relative who has tested positive for an
- You have any of the following:
- Breast cancer at age 50 or younger.
- Male breast cancer at any age.
- Ovarian cancer at any age.
- Triple-negative breast cancer at any age.
- Two separate breast cancer diagnoses.
- Eastern European Jewish ancestry and breast cancer at any age.
- Lobular breast cancer and a family history of diffuse gastric cancer.
- breast cancer and are at high-risk for recurrence.
- Tumor testing shows a mutation in a gene that is associated with .
OR
- You have one or more close family members who have had:
- Young-onset or rare cancers.
- Breast cancer at age 50 or younger.
- Triple-negative breast cancer.
- Male breast cancer, ovarian cancer, pancreatic cancer or cancer at any age.
- Two separate cancer diagnoses.
- Metastatic prostate cancer or prostate cancer that is high-risk or very-high-risk.
The American Society of Breast Cancer Surgeons (ASBrS) released guidelines in 2019 recommending that all women diagnosed with breast cancer have access to genetic testing for inherited mutations in breast cancer genes.
If you are uncertain whether you meet the guidelines above and you are interested in or considering genetic testing, you should speak with a cancer genetics expert.
Updated: 07/28/2023
- I had breast cancer before the age of 50; should I consider genetic counseling or testing?
- My (sister/mom/grandma) got breast cancer at an early age, but I do not know much about my family history. Should I get consider genetic counseling and/or genetic testing?
- Some of the women on my dad’s side of the family had breast cancer before age 45. Does this affect me?
- Will my insurance cover genetic testing?
- If my insurance won't cover genetic testing and I still would like to have it, are there low-cost options for testing?
- Can you refer me to a genetic counselor?
The following clinical trials include genetic counseling and testing.
- NCT02620852: WISDOM Study: Women Informed to Screen Depending on Measures of Risk offers women ages 40-74 the opportunity to undergo risk assessment and genetic testing in order to determine the best breast screening options based on their situation.
- NCT05562778: Chatbot to maximize hereditary cancer genetic risk assessment. Researchers are testing whether a mobile health platform, known as a "chatbot" can improve rates of genetic testing among Medicaid patients with an elevated risk having an inherited mutation.
- NCT05427240: eHealth Delivery Alternative for Cancer Genetic Testing for Hereditary Cancer (eReach2). This study will look at the effectiveness of offering web-based options for pre/post-test genetic counseling to provide equal or improved timely uptake of genetic services and testing.
- NCT05694559: Connecting Black Families in Houston, Texas to Hereditary Cancer Genetic Counseling, Genetic Testing, and Cascade Testing by Using a Simple Genetic Risk Screening Tool and Telegenetics. This study will provide genetic testing to 150 Black individuals and families and provide genetic counseling and risk reduction resources to individuals with a mutation linked to increased cancer risk.
Other genetic counseling or testing studies may be found here.
Updated: 02/29/2024
The following clinical research studies focus on addressing in cancer:
- NCT04854304: Abbreviate or FAST Breast for Supplemental Breast Cancer Screening for Black Women at Average Risk and Dense Breasts. This study looks at how effectively a FAST breast MRI can successfully detect breast cancer in Black women with dense breasts.
Updated: 01/13/2025
The following organizations offer peer support services for people with or at high risk for breast cancer:
- FORCE peer support:
- Our Message Boards allow people to connect with others who share their situation. Once you register, you can post on the Diagnosed With Cancer board to connect with other people who have been diagnosed.
- Our Peer Navigation Program will match you with a volunteer who shares your mutation and situation.
- Connect online with our Private Facebook Group.
- Join our virtual and in-person support meetings.
- Other organizations that offer breast cancer support:
Updated: 05/07/2024
The following resources can help you locate a genetics expert near you or via telehealth.
Finding genetics experts
- The National Society of Genetic Counselors website has a search tool for finding a genetic counselor by specialty and location or via telehealth.
- InformedDNA is a network of board-certified genetic counselors providing this service by telephone. They can also help you find a qualified expert in your area for face-to-face genetic counseling if that is your preference.
- Gene-Screen is a third-party genetic counseling group that can help educate, support and order testing for patients and their families.
- JScreen is a national program from Emory University that provides low-cost at-home genetic counseling and testing with financial assistance available.
- Grey Genetics provides access to genetic counselors who offer genetic counseling by telephone.
- The Genetic Support Foundation offers genetic counseling with board-certified genetic counselors.
Related experts
Genetics clinics
- The American College of Medical Genetics website has a tool to find genetics clinics by location and specialty.
Other ways to find experts
- Register for the FORCE Message Boards and post on the Find a Specialist board to connect with other people who share your situation.
- The National Cancer Institute (NCI)-designated comprehensive cancer centers have genetic counselors who specialize in cancer.
- FORCE's toll-free helpline (866-288-RISK, ext. 704) will connect you with a volunteer board-certified genetic counselor who can help you find a genetics expert near you.
Updated: 07/21/2023
Who covered this study?
Breastcancer.org
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