Sistas Taking a Stand for Breast Cancer Research (STAR) Study: A Community-Based Participatory Genetic Research Study to Enhance Participation and Breast Cancer Equity among African American Women in Memphis, TN

Abstract

African American women are substantially underrepresented in breast cancer genetic research studies and clinical trials, yet they are more likely to die from breast cancer. Lack of trust in the medical community is a major barrier preventing the successful recruitment of African Americans into research studies. When considering the city of Memphis, TN, where the percentage of African Americans is significantly higher than the national average and it has a high rate of breast cancer mortality inequities among African American women, we evaluated the feasibility of utilizing a community-based participatory (CBPR) approach for recruiting African American women into a breast cancer genetic study, called the Sistas Taking A Stand for Breast Cancer Research (STAR) study. From June 2016 and December 2017, African American women age 18 and above were recruited to provide a 2 mL saliva specimen and complete a health questionnaire. A total of 364 African American women provided a saliva sample and completed the health questionnaire. Greater than 85% agreed to be contacted for future studies. Educational workshops on the importance of participating in cancer genetic research studies, followed by question and answer sessions, were most successful in recruitment. Overall, the participants expressed a strong interest and a willingness to participate in the STAR study. Our findings highlight the importance of implementing a CBPR approach that provides an educational component detailing the importance of participating in cancer genetic research studies and that includes prominent community advocates to build trust within the community.

Distinct microbial communities that differ by race, stage, or breast-tumor subtype in breast tissues of non-Hispanic Black and non-Hispanic White women

“…It is well documented that NHB women are more likely to be diagnosed with TNBC and are most likely to die from breast cancer compared to all other ethnic groups 2,4,12,15,16 . However, NHB women are underrepresented in breast cancer research studies 17,18 , including studies investigating the breast microbiome. Our study is the first to show differences in the breast tissue microbiota between NHB and NHW women.…”

African American participation in cancer clinical trials

“…In addition to video interventions, CBPR which integrates community members in the research design was used. Four studies employed a CBPR method in different ways with varying results [48][49][50][51]. Overall, these studies showed markedly improved AA participation, with one showing a 373% increase in enrollment (22 to 104 enrollees) in 11 months [49].…”

Intervention and Public Policy Pathways to Achieve Health Care Equity

“…Considering influences at the community and societal level, Smith et al [21] note that implementing community-based participatory research strategies, where community trust agents are engaged and community education on disease states is utilized, provide an opportunity to reach underserved populations and enhance their health outcomes. Social context is important in understanding racial disparities in physical activity [22].…”

“…The analysis by Smith, Vidal, Pritchard, Blue, Martin, Rice, Brown and Starlard-Davenport [21] described the importance of genetic research studies in evaluating cancer-related mortality among black breast cancer survivors in Memphis, Tennessee. Their study indicated that a community-based participatory approach could help recruit more breast cancer survivors in genetic research projects.…”