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科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的遗传标记正在改变检测和定义疾病的方式。媒体对基因发现的报道和直接面向消费者的检测可能会增加公众的好奇心和担忧。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并没有很好地体现出来。此外，遗传学在常规护理中的更广泛应用受到少数族裔在基因研究中代表性不足的限制。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的未来愿景优先考虑将遗传学更好地整合到日常临床实践中，并确保不同群体在基因研究中的代表性。在这一愿景的基础上，我们的短期目标是更好地了解各种因素的影响，例如医疗不信任、遗传素养、对遗传结果含义的困惑，以及对基因检测对常规临床护理中的遗传学整合和参与基因研究的负面影响的担忧。这些问题没有在少数族裔人口的社区样本范围内得到彻底研究。因此，我们的具体目标是评估城市非裔美国成年人对将遗传学作为他们日常保健的一部分以及他们参与基因研究的接受程度。首先，认知访谈(n=20)将用于开发和提炼关于基因组医学和遗传研究的调查项目。然后，我们将使用以社区为基础的招募方法，对非洲裔美国成年人(n=300；男性和女性各占50%)进行调查。将探讨男女在反应上的差异，以及在日常护理中使用遗传学的意愿与参与基因研究的意愿之间的联系。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。这些发现将成为未来研究的长期目标，目的是探索基因药物和研究的种族差异，开发干预措施，加强患者与提供者之间关于疾病遗传风险的沟通，并开发招募材料，以更有效地增加种族/少数民族对基因研究的参与。 公共卫生相关性：公众和临床使用的遗传风险评估工具的可用性增加，以及对基因研究的日益重视，正在改变临床医学的面貌。这项研究调查了非裔美国成年男性和女性如何理解、优先考虑和感知基因组医学在临床和研究环境中的障碍和好处。结果将为未来旨在更有效地进行翻译研究提供参考 在少数族裔社区使用基因组药物，并增加少数族裔对基因研究的招募。

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. PUBLIC HEALTH RELEVANCE: The increased availability of genetic risk assessment tools for public and clinical use, along with a growing emphasis on genetic research, is changing the face of clinical medicine. This study examines how African American adult men and women understand, prioritize, and perceive barriers and benefits to genomic medicine in both clinical and research settings. Results will inform future translational studies aimed at the more effective use of genomic medicine in racial/ethnic minority communities and at increasing racial/ethnic minority recruitment to genetic research studies.