UNDERSTANDING AFRICAN AMERICANS' RECEPTIVITY TO GENETIC MEDICINE AND RESEARCH

描述（由申请人提供）：基因组医学和基因检测的最新进展增加了专业和常规临床护理中基因评估的可用性和可及性。在健康个体中分离疾病风险遗传标记正在改变疾病检测和定义的方式。媒体对基因发现的报道和直接面向消费者的检测方法的可用性可能会增加公众的好奇心和关注。然而，在健康个体中，特别是在种族/少数民族人群中，对在常规临床护理中使用遗传学的兴趣尚未得到很好的表征。此外，遗传学在常规护理中的广泛应用受到遗传研究中少数种族/民族代表性不足的限制。认识到这些问题，国家人类基因组研究所2011年对基因组医学和研究未来的愿景优先考虑将遗传学更好地整合到日常临床实践中，并确保基因研究中不同人群的代表性。在这一愿景的基础上，我们的短期目标是更好地理解各种因素的影响，如医学不信任、基因知识、对基因结果含义的困惑，以及对基因检测对常规临床护理背景下遗传学整合和参与基因研究的负面影响的担忧。这些问题尚未在种族/少数民族人口的社区样本范围内进行彻底研究。因此，我们的具体目标是评估城市非洲裔美国成年人对将遗传学作为其常规医疗保健的一部分以及参与基因研究的接受程度。首先，认知访谈（n=20）将用于开发和完善关于基因组医学和基因研究的调查项目。然后，我们将采用基于社区的招募方法对非裔美国成年人（n= 300； 50%男性，50%女性）进行调查。将探讨男女在反应上的差异，以及在常规护理中使用遗传学的意愿与参与基因研究的意愿之间的关系。这项研究将有助于深入了解非裔美国成年人如何看待基因组医学和参与基因研究。研究结果将为未来的研究提供信息，这些研究的长期目标是探索种族对基因组医学和研究的接受程度差异，制定干预措施以增加患者与提供者关于疾病遗传风险的沟通，以及制定招募材料以更有效地增加种族/少数民族对基因研究的参与。

DESCRIPTION (provided by applicant): Recent advances in genomic medicine and genetic testing have increased availability of and access to genetic assessments in both specialty and routine clinical care. Isolation of genetic markers for disease risk among healthy individuals is changing the way in which diseases are detected and defined. Media reports of genetic findings and availability of direct-to-consumer tests may increase both public curiosity and concern. However, interest in use of genetics in routine clinical care has not been well characterized in healthy individuals, particularly among racial/ethnic minority populations. Additionally, broader application of genetics in routine care is limited by under-representation of racial/ethnic minorities in genetic research. Recognizing these issues, the National Human Genome Research Institute's 2011 vision for the future of genomic medicine and research prioritizes the need to better integrate genetics into everyday clinical practice and assure representation of diverse populations in genetic research. Building on this vision, our short-term goal is to better understand the impact of factors such as medical mistrust, genetic literacy, confusion about meaning of genetic results, and concern about negative repercussions from genetic testing on the integration of genetics within the context of routine clinical care and on participation in genetic research. These issues have not by thoroughly studied within the context of community samples of racial/ethnic minority populations. Thus, our Specific Aim is to assess urban African American adults' receptivity to using genetics as part of their routine healthcare and to their participation in genetic research. First, cognitive interviews (n=20) will be used to develop and refine survey items about genomic medicine and genetic research. We will then conduct surveys with African American adults (n= 300; 50% male, 50% female) using a community-based recruitment approach. Male-female differences in responses will be explored, as will associations between willingness to use genetics in routine care vs. willingness to participate in genetic research. This research will lend insight into how African American adults view genomic medicine and participation in genetic research. Findings will inform future studies with the long-term goals of exploring racial differences in receptivity to genomic medicine and research, developing interventions to increase patient-provider communication about genetic risks for disease, and developing recruitment materials to more effectively increase racial/ethnic minorities participation in genetic research.