PDF(Pubmed)
Abstract：
Geographical ancestry has been associated with an increased risk of various genetic conditions. Race and ethnicity often have been used as proxies for geographical ancestry. Despite numerous problems associated with the crude reliance on race and ethnicity as proxies for geographical ancestry, some genetic testing in the clinical, research, and employment settings has been and continues to be race- or ethnicity-based. Race-based or race-targeted genetic testing refers to genetic testing offered only or primarily to people of particular racial or ethnic groups because of presumed differences among groups. One current example is APOL1 testing of Black kidney donors. Race-based genetic testing raises numerous ethical and policy questions. Given the ongoing reliance on the Black race in genetic testing, it is important to understand the views of people who identify as Black or are identified as Black (including African American, Afro-Caribbean, and Hispanic Black) regarding race-based genetic testing that targets Black people because of their race. We conducted a systematic review of studies and reports of stakeholder-engaged projects that examined how people who identify as or are identified as Black perceive genetic testing that specifically presumes genetic differences exist among racial groups or uses race as a surrogate for ancestral genetic variation and targets Black people. Our review identified 14 studies that explicitly studied this question and another 13 that implicitly or tacitly studied this matter. We found four main factors that contribute to a positive attitude toward race-targeted genetic testing (facilitators) and eight main factors that are associated with concerns regarding race-targeted genetic testing (barriers). This review fills an important gap. These findings should inform future genetic research and the policies and practices developed in clinical, research, public health, or other settings regarding genetic testing.
摘要：
地理血统与各种遗传条件的风险增加有关。种族和民族经常被用作地理祖先的代理。尽管存在许多与对种族和族裔作为地理血统代理的粗暴依赖相关的问题，一些临床上的基因检测，研究,就业环境一直并将继续以种族或种族为基础。基于种族或针对种族的基因检测是指仅或主要针对特定种族或族裔群体的人提供的基因检测，因为群体之间的假定差异。一个当前的实例是黑肾供体的APOL1测试。基于种族的基因检测引发了许多道德和政策问题。鉴于基因检测对黑人种族的持续依赖，重要的是要了解那些被认定为黑人或被认定为黑人的人的观点（包括非洲裔美国人，非洲-加勒比,和西班牙裔黑人）关于基于种族的基因测试，该测试针对黑人，因为他们的种族。我们对利益相关者参与的项目的研究和报告进行了系统的回顾，这些项目研究了被认定为或被认定为黑人的人如何看待基因检测，特别假定种族群体之间存在遗传差异，或者使用种族作为祖先遗传变异的替代品，并针对黑人。我们的综述确定了14项明确研究了这个问题的研究，另外13项研究了这个问题。我们发现了四个主要因素，这些因素有助于对针对种族的基因检测（促进者）持积极态度，以及与对针对种族的基因检测（障碍）的担忧相关的八个主要因素。这篇综述填补了一个重要的空白。这些发现应该为未来的遗传研究以及临床上制定的政策和实践提供信息，研究,公共卫生,或其他有关基因检测的设置。
