Department of Family Medicine and Community Health, University of Kansas Medical Center, School of Medicine, Kansas City, Kansas.
Department of Internal Medicine, University of Kansas Medical Center, School of Medicine, Kansas City, Kansas.
J Genet Couns. 2020 Aug;29(4):518-529. doi: 10.1002/jgc4.1277. Epub 2020 Apr 15.
African Americans (AA), the second largest racial/ethnic minority group in the United States (US), carry the largest mortality burden of cancer compared with other racial/ethnic groups (Cancer Facts & Figures for African Americans, 2019-2021, American Cancer Society).One solution to address this disparity is through cancer-related genetic counseling and testing (CGT). Although CGT is utilized among the general population, it remains underutilized among AA populations. Community-engaged and community-driven health promotion programs within faith-based organizations (FBOs) have been successfully implemented and delivered among AA populations (Israel et al., American Journal of Public Health, 100, 2010, 2094). FBOs are well positioned for cancer-related health promotion and equipped as conduits of health education and information distribution for cancer prevention. In the present pilot study, a community-based participatory approach (CBPR) was used to collect exploratory data on attitudes, perceptions, and beliefs toward CGT and uptake among an AA sample in the Midwest. Focus groups were conducted in two churches where respondents (N=34) answered a pre-focus group survey prior to a discussion. Respondents were largely unaware of CGT and thought of testing as primarily for ancestral discovery and not for an inheritable disease. Themes identified through qualitative analysis included emotional experiences with cancer; perception of cancer risk; different pictures of genetic testing; other things to worry about; trust in the healthcare system/faith in God and the healthcare system; and ideas and insights regarding promotion of CGT. These primary themes showed participants' perceptions of CGT were shaped by their experiences with cancer, faith, faith communities/FBOs, and cost and access to CGT. Overall, participants within these organizations had positive perceptions about the church as a conduit of genetic testing information but had mixed opinions about the rationale for completing CGT. These findings have implications for genetic counselors, medical providers, and health promotion personnel as to how AA faith populations view CGT and the utility of FBOs as promoters of CGT information.
非裔美国人（AA）是美国第二大少数族裔，与其他族裔相比，癌症死亡率负担最大（《2019-2021 年美国癌症事实与数据：非裔美国人篇》，美国癌症协会）。解决这一差距的方法之一是进行癌症相关的遗传咨询和检测（CGT）。尽管 CGT 在一般人群中得到了应用，但在 AA 人群中的应用仍然不足。基于信仰的组织（FBO）中的社区参与和社区驱动的健康促进计划已在 AA 人群中成功实施和开展（Israel 等人，《美国公共卫生杂志》，100 卷，2010 年，第 2094 页）。FBO 非常适合进行癌症相关的健康促进，并且可以作为癌症预防健康教育和信息传播的渠道。在本试点研究中，采用社区参与式研究（CBPR）方法，在中西部的 AA 样本中收集关于 CGT 的态度、看法和信念以及采用率的探索性数据。在两个教堂进行了焦点小组讨论，参加者（N=34）在讨论前回答了一份预焦点小组调查。大多数参加者对 CGT 知之甚少，认为检测主要是为了发现祖先，而不是为了遗传性疾病。通过定性分析确定的主题包括：癌症的情感体验；对癌症风险的认识；对基因检测的不同看法；还有其他令人担忧的事情；对医疗保健系统的信任/对上帝和医疗保健系统的信任；以及关于促进 CGT 的想法和见解。这些主要主题表明，参与者对 CGT 的看法是由他们的癌症经历、信仰、信仰社区/FBO 和 CGT 的成本和可及性塑造的。总的来说，这些组织中的参与者对教会作为遗传检测信息的渠道有积极的看法，但对完成 CGT 的理由持不同意见。这些发现对遗传咨询师、医疗服务提供者和健康促进人员具有重要意义，他们可以了解 AA 信仰人群对 CGT 的看法，以及 FBO 作为 CGT 信息推动者的效用。
