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Study: Racial disparities in BRCA testing: Why?

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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 mutation than non-Jewish white women. Yet studies show that fewer black women have testing. Researchers do not understand why this disparity exists. 

Study findings: 

  1. Black women with breast cancer were less likely than white women to have testing.
    • About one-quarter of black women had testing, compared to almost one-half of white women.
  2. Black women with breast cancer were less likely to report positive attitudes about testing and were more likely to report negative attitudes.
  3. 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.
  4. A physician recommendation was strongly associated with testing. For unknown reasons, surgeons and oncologists were about 1.5 times less likely to recommend 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 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 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 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 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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This article is relevant for:

African American women who have been diagnosed with breast cancer

This article is also relevant for:

Breast cancer survivors

ER/PR +

Her2+ breast cancer

Metastatic cancer

Triple negative breast cancer

Women under 45

Women over 45

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IN DEPTH REVIEW OF RESEARCH

Study background:

Black and White non-Jewish/non-Hispanic women have similar chances of carrying a mutation. A recent study suggests that young black women with breast cancer are about twice as likely to carry a mutation compared to non-Hispanic white women. However, many studies have shown that black women do not get tested for as often as white women do. Researchers do not understand why this racial disparity exists.

When researchers of this study explored a possible explanation for this disparity, they noted that racial groups could be segregated unevenly in U.S. cities, suggesting that black women and white women may not be seeing the same healthcare providers. Anne Marie McCarthy and her colleagues at Harvard Medical School and other institutions published research in the Journal of Clinical Oncology to determine if black and white women are seeing different types health care providers and whether or not this accounts for the racial disparity in testing.  

Researchers of this study wanted to know:

Why are black women not receiving testing as often as white women?

Population(s) looked at in the study:

The women in this study were between 18-64 years old, from Florida and Pennsylvania, and were diagnosed with localized or invasive breast cancer between 2007-2009. A total of 3,016 women (69% white and 31% black) were surveyed, with a response rate of 61%. Physicians were also surveyed; their response rate was 29% (808 oncologists and 732 surgeons).

Study findings: 

  1. The care of black and white women with breast cancer is highly segregated across surgeons and oncologists.
    • Oncologists and surgeons who cared for the most black patients were younger and more likely to be female.
  2. A physician recommendation was strongly associated with testing. For unknown reasons, surgeons and oncologists were about 1.5 times less likely to recommend testing to their black patients than their white patients.
    • Surgeons and oncologists who cared for more black patients did not differ in their attitude towards testing compared to surgeons and oncologists who saw more white patients.   
    • The characteristics of the surgeons and oncologists (age, sex, U.S.-trained, employment type, and when they graduated from medical school) did not explain the racial disparity in testing recommendations between black and white women.
  3. Black women with breast cancer were less likely than white women to have testing.
    • About one-quarter of black women had testing compared to almost one-half of white women.

Limitations:

While 61% of women who qualified for the study responded to the survey, the characteristics of the respondents, including age, race and year of diagnosis, differed from the women who did not respond. Black women were also less likely than white women to provide data about their physicians. Because this data was based on a survey, some bias could exist in the women’s answers. For example, women who were tested may have been more likely to remember that their physician recommended testing than women who chose not to undergo testing.

This was a population-based study, meaning that not all the women involved met guidelines for genetic testing—the results might be different if study participants included only women who met guidelines for genetic testing. Additionally, researchers could not compare women who received care at academic centers versus non-academic centers. This study only looked at oncologists and surgeons. Other types of doctors could be involved, although in the researchers’ experience, few patients receive breast cancer care from health care providers other than oncologists and surgeons.

Finally, this study included only women from Florida and Pennsylvania. The researchers state that while those populations are large and diverse, it is possible that the patterns in those states are not the same as what may be seen in other areas in the U.S.

Conclusions:

This study suggests that although black and white women do not see the same health care providers (some providers see more black women than white and vice versa because of the area in which they practice), that does not explain why black women have testing less often than white women. This study did reaffirm that fewer black women are receiving recommendations to get testing than white women. The researchers suggest this may be because family cancer history information may be less complete among black women. This could stem from either less awareness of cancer diagnoses in other family members, or healthcare providers not asking about family history as often for black women as they do for white women. Even though black women have a similar, if not higher chance of carrying a as a non-Jewish white women, when researchers applied the 2007 risk assessment guidelines to their study population, they found that a lower proportion of black women were classified as “high risk” compared to white women. Using the current criteria, which includes women diagnosed with breast cancer before age 45 (previous guidelines included patients before age 40) and women with before age 60, might increase the number of black women who would meet national guidelines for testing.

Because the study did not include discussion about genetic counseling, it is unknown whether these patients saw genetic counselors, and whether seeing a genetic counselor increased genetic testing.  

Ultimately, more work needs to be done to understand why this racial disparity in testing between black and white women exists. Until then, healthcare providers should be more conscious to fully assess risk for black women, who should question their health care providers if they believe they may be at genetic risk for breast cancer.

Posted July 21, 2016

Share your thoughts on this XRAYS article by taking our brief survey.

Expert Guidelines
Expert Guidelines

The National Comprehensive Cancer Network has guidelines on who should undergo genetic counseling and testing. If you have been diagnosed with breast cancer, you should speak with a genetics expert about genetic testing if any of the following apply to you:     

  • You have a blood relative who has tested positive for an inherited mutation 
  • You have any of the following:  
    • Breast cancer at age 50 or younger  
    • Male breast cancer at any age
    • Ovarian cancer at any age  
    • at any age 
    • Two separate breast cancer diagnoses
    • Eastern European Jewish ancestry and breast cancer at any age 
    • breast cancer 
    • Testing of your tumor shows a mutation in a gene that is associated with
    • breast cancer and high risk for recurrence
    • Lobular breast cancer and a family history of diffuse gastric cancer

OR 

  • You have one or more close family members who have had:  
    • Young-onset or rare cancers 
    • Breast cancer at age 50 or younger
    • Male breast cancer, ovarian cancer, pancreatic cancer, or   cancer at any age
    • Two separate cancer diagnoses 
    • cancer at age 55 or younger or prostate cancer 

The American Society of Breast Cancer Surgeons (ASBrS) released guidelines in 2019 that recommend 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: 11/22/2021

Questions To Ask Your Doctor
Questions To Ask Your Doctor

  • 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? 

Open Clinical Trials
Open Clinical Trials

Below are clinical trials that include genetic counseling and testing.

Other genetic counseling or testing studies may be found here.

 

Updated: 12/05/2021

Open Clinical Trials
Open Clinical Trials

The following clinical research studies focus on addressing in cancer. 

Updated: 11/03/2022

Peer Support
Peer Support

The following organizations offer peer support services for people with, or at high risk for breast cancer:

Updated: 11/29/2022

Find Experts
Find Experts

Health care providers who are specially trained in genetics can help you more clearly understand your risk for . The following resources can help you locate a genetics expert in your area.

  • The National Society of Genetic Counselor website offers a searchable directory for finding a genetic counselor by state and specialty. To find a genetic counselor who specializes in cancer genetics, choose "cancer" under the options "Area of Practice/Specialization." 
  • 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. 
  • JScreen is a national program based out of 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. 
  • FORCE's toll-free helpline at: 866-288-RISK, ext. 704 will connect you with a volunteer board-certified genetic counselor who can answer general questions about genetic testing and cancer and help you find a genetics expert near you. 
  • FORCE Peer Navigator Program will match you with a volunteer who has undergone genetic counseling and can help you navigate resources to find a genetic counselor near you.
  • Ask your doctor for a referral to a genetics expert. 

Updated: 03/16/2022

Who covered this study?

Oncology Nurse Advisor

BRCA1/2 testing recommendations vary between black and white patients This article rates 3.0 out of 5 stars

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