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.

中文翻译：

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招募非裔美国女性进行乳腺癌遗传学研究的挑战

背景非洲裔美国女性，尤其是在美国南部，在癌症遗传学研究中的代表性不足。一项研究旨在通过调查阿肯色州有乳腺癌个人和/或家族史的非裔美国女性的种系突变率来解决这个问题。使用大量乳腺癌易感基因对女性进行了这些突变测试。在这项分析中，我们讨论了从现有的生物样本库中招募非裔美国女性参与这项研究时遇到的挑战。方法我们试图联系 965 名有乳腺癌个人和/或家族史的非裔美国女性，她们参加了 Spit for 2007 年至 2013 年之间的治疗（SFTC），并同意重新联系。SFTC 参与者通过电话和电子邮件被邀请参加基因研究。注册需要完成电话采访以获得家庭和病史并返回签署的同意书。结果在符合条件的 SFTC 参与者中，39.6% (382/965) 能够通过他们提供的电话号码和电子邮件地址联系到。其中，174 人（45.5%）完成了电话采访并返回了签署的同意书。其他人无法联系（n = 583），拒绝参加（n = 57），没有保持电话采访预约（n = 82），完成电话采访但从未返回签署的同意书（n = 54），已故（n = 13），或因过于困惑而无法同意参与（n = 2）。结论招募非裔美国女性参加我们的乳腺癌遗传学研究被证明具有挑战性，主要是因为难以与潜在参与者建立联系。鉴于他们之前参与过乳腺癌研究，我们预计这将是一个积极进取的人群。事实上，当我们能够联系到 SFTC 参与者时，只有 14.9% 的人拒绝参与我们的研究。未来的研究需要创新的沟通、保留和招聘策略来解决我们面临的招聘挑战。