Abstract
BackgroundAfrican-American women, especially in the southern United States, are underrepresented in cancer genetics research. A study was designed to address this issue by investigating the germline mutation rate in African-American women in Arkansas with a personal and/or family history of breast cancer. Women were tested for these mutations using a large panel of breast cancer susceptibility genes. In this analysis, we discuss the challenges encountered in recruiting African-American women from an existing biorepository to participate in this study.MethodsWe attempted to contact 965 African-American women with a personal and/or family history of breast cancer who participated in Spit for the Cure (SFTC) between 2007 and 2013 and provided consent to be recontacted. The SFTC participants were invited by telephone and email to participate in the genetic study. Enrollment required completion of a phone interview to obtain a family and medical history and return of a signed consent form.ResultsAmong eligible SFTC participants, 39.6% (382/965) were able to be contacted with the phone numbers and email addresses they provided. Of these, 174 (45.5%) completed a phone interview and returned a signed consent form. Others were not able to be contacted (n = 583), declined to participate (n = 57), did not keep phone interview appointments (n = 82), completed the phone interview but never returned a signed consent (n = 54), were deceased (n = 13), or were too confused to consent to participate (n = 2).ConclusionsRecruiting African-American women into our breast cancer genetics study proved challenging primarily due to difficulty establishing contact with potential participants. Given their prior participation in breast cancer research, we anticipated that this would be a highly motivated population. Indeed, when we were able to contact SFTC participants, only 14.9% declined to participate in our study. Innovative communication, retention, and recruitment strategies are needed in future studies to address the recruitment challenges we faced.
Highlights
African-American women, especially in the southern United States, are underrepresented in cancer genetics research
Spit for the Cure (SFTC) participants had previously given consent for their samples to be used for breast cancer research, we felt it was important to recontact them to obtain a separate informed consent for the new study because of the implications that genetic test results could have on clinical care for them and their families
We encountered challenges recruiting African-American women with a personal or family history of breast cancer from an existing biorepository to participate in a study evaluating germline genetic mutations, despite the fact that they had previously participated in breast cancer research
Summary
African-American women, especially in the southern United States, are underrepresented in cancer genetics research. A study was designed to address this issue by investigating the germline mutation rate in African-American women in Arkansas with a personal and/or family history of breast cancer. Women were tested for these mutations using a large panel of breast cancer susceptibility genes In this analysis, we discuss the challenges encountered in recruiting African-American women from an existing biorepository to participate in this study. A study at the University of Arkansas for Medical Sciences was designed to address this issue by investigating the germline mutation rate in African-American women in Arkansas with a personal and/or family history of breast cancer using a Compadre et al Hereditary Cancer in Clinical Practice (2018) 16:8 multiplex panel from the University of Washington that includes 48 genes, including BRCA1, BRCA2 and other known cancer susceptibility genes [10, 11].
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