In 2002, we started out with one objective: to learn more about why more young Black women develop breast cancer. As a research team with a focus on hereditary cancers, we sought to understand the role of genetic factors in breast cancer. In 2007, our work with Community Advisory Panel (CAP) members led us to identify a need to conduct research on how to increase awareness about hereditary breast and ovarian cancer in the Black community. Today, our research can truly be described as interdisciplinary. Our team has research interests in cancer genetics, epidemiology, health education, and social/behavioral aspects of clinical cancer genetics.

Our team’s cancer genetics/epidemiological research focuses on:

• Identification of individuals with genetic and environmental risk factors that place them at increased risk of developing cancer
• Development of strategies to reduce this risk

Our social/behavioral and health education research focuses on:

• Increasing awareness, knowledge, and risk appropriate utilization of genetics services among patients and healthcare providers
• Recruitment of Black women to genetic-based research studies
• Development of culturally tailored genetic counseling material and lay appropriate educational material on hereditary breast cancer

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Black Women: Etiology and Survival of Triple Negative Breast Cancers (BEST) Study

What are the aims of the study?

Young Black women more commonly develop breast cancer, particularly aggressive forms of the disease including triple-negative breast cancers for which there are limited treatments. Therefore, the goals of our study are to help women by: 

• Identifying factors that increase the risk for poorer health outcomes
• Evaluating effective prevention and screening strategies
• Assessing treatment options and access to care

Who can participate?

All participants recruited for this study are identified through the Florida and Tennessee state cancer registries and must meet the following criteria:

• Female
• English-speaking
• Self-identified as Black
• Diagnosed with invasive breast cancer at or before age 50 within Florida or Tennessee between 2009-2014
• Able to provide informed consent

What does participation entail?

After recruitment into the study, participants complete medical records and tissue/tumor release forms for collection of tumor samples and medical records. A baseline questionnaire is also completed to collect detailed personal and family history information. As part of our study, we collect a saliva sample via a mail-in kit and provide no-cost genetic counseling and testing for the participants. These genetic test results allow the participants and their families to make important decisions about their healthcare.

How many participants are currently enrolled?

We have successfully recruited over 400 Black women into our study. To view a more detailed description of this cohort, please click here. 

Why is this study unique?

Our research team includes Black community members that ensure our research is relevant, and that the recruitment and study procedures were conducted in a sensitive manner. They also helped share important study findings with the Black community.

What information is obtained from this study?

To date, our results have shown that over 12% of women with breast cancer diagnosed at or below the age of 50 had a BRCA mutation, which is more than double what we had expected. This suggests that it may be appropriate to recommend BRCA testing in all Black women diagnosed with breast cancer at or below the age of 50, regardless of their family history.

Additionally, women with private insurance and a higher household income were more likely to access genetic services, with the strongest determining factor being a referral from their healthcare provider. This suggests that raising awareness about the importance of inherited breast cancers among patients, as well as healthcare providers, is needed.

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A Population-Based Study of Inherited Breast Cancer in Young African American Women with Breast Cancer

Objectives:

• Determine if it is possible to recruit young African American women with breast cancer through the Florida Cancer Data System (FCDS), a statewide population-based registry. (At the time, previous research indicated that African American women were unlikely to participate in registry-based research)
• Find out how common alternatives in the BRCA1 and BRCA2 genes are in these women
• Spread information about breast cancer genetics through community partnerships, at local, regional and national levels.

How is the registry-based recruitment method used in this study different from other recruitment methods?

When researchers recruit participants, it is often done face to face. A potential participant is usually approached at a clinic or out in the community. Once approached, the participant is asked to be a part of the study by a team member. If they are interested, they join the study by signing a consent form.

In this study, our initial contact was not face to face. We received a list of names from the Florida Cancer Data System. This list included all individuals diagnosed with cancer that fit our inclusion criteria. We contacted these individuals first by US mail and then by calling them to see if they were interested in participating. If they were interested, a consent form was mailed to them. Women were officially enrolled when the consent form was returned to us via US mail.

What was learned from this study?

Through this study, we were able to gain a better idea of the prevalence of BRCA mutations in the African American population. In our population, the frequency of mutations was about 7%. This is similar to what is seen in the Caucasian population (7-10%). In addition, we learned that African American women are interested and willing to participate in research even if they are apart of a registry-based sample. They also found genetic counseling to be an enjoyable experience. Most importantly, this project laid the groundwork for future studies of biological reasons for breast cancer and feelings about genetic testing in this population.

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Investigation of BRCA1/2 and Hormonal Risk Factors in African-Americans

About this study:

In this study, we examined genetic factors in African American women by looking at the involvement of the high penetrance BRCA1 and BRCA2 genes through genetic testing. Low penetrance genes were studied through examination of hormonal risk factors such as age at menstruation, age at menopause, pregnancy and lactation history, oral contraceptive pill, and hormone replacement therapy.

What we learned:

This study improved our understanding of inherited breast cancer in young African American women.  It also laid the groundwork for future studies in the state of Florida directly investigating ‘weak effect’ genes and changes in hormone metabolism in young African American women.

About this study:

This was a hospital-based study of African-American women with 1) breast cancer diagnosed at a young age and/or 2) a family history of breast and/or ovarian cancer.  All participants received pre- and post-test genetic counseling by a geneticist or genetic counselor.  Complete sequencing of the BRCA1 and BRCA2 genes was performed and patients will be given the option to receive results.