HUMAN GENOME EDUCATION MODEL PROJECT

人类基因组计划(HGP)正在进行中，以绘制和测序 人类基因组，介绍了人类基因组中最重要的发展之一 十年中的医疗保健。在识别和识别方面的快速进步 有些情况下，防治遗传病有深远的意义 对遗传性疾病患者和多种疾病的影响 为他们提供服务的纪律卫生专业人员。这个 人类基因组教育模式(HGEM)项目的总体目标是 从人类基因组计划的发展中获得最佳利益 个人和家庭成员(包括那些服务不足的人 人口)的90个自愿遗传支持团体和多个 25个大学附属课程中的纪律专业人员 为广泛的个人网络提供诊断和健康服务 患有遗传性和非遗传性相关残疾和慢性病。 其目的是：(1)评估学生的知识、态度、经验和 300名消费者和300名非遗传性健康人群抽样调查的实践 与人类基因组计划及其伦理、法律和社会有关的专业人员 影响；(2)利用调查结果制定HGEM 消费者和健康专业人员，他们提供诊断和 为遗传疾病消费者/潜在消费者提供干预服务 (3)利用HGEM(A)教育80 消费者和80名多学科健康专业领导者在两个 美国各地区；和(B)激励、培训和提供 为领导提供资源，在40个地方教育另外600名消费者， 区域和国家遗传支持团体和遗传网络 作为25个UAP中的312名专业人员；以及(4)评估 教育活动的实效性。国家咨询 委员会将为每个项目的规划过程提供持续的投入 相位。实施的一个重要方面是形成区域 两个地区的协调委员会将包括消费者、基因 专业人士，以及其他健康专业人员。HGEM项目是 求婚三年。HGEM项目是以下项目的联合努力 乔治敦大学儿童发展中心-大学附属 计划和遗传支持团体联盟。

The Human Genome Program (HGP), now underway to map and sequence the human genome, introduces one of the most significant developments in health care in the decade. The rapid advances in identifying and, in some cases, preventing and curing genetic disease have profound implications for persons with genetic disorders and for the multi- disciplinary health professionals who provide services to them. The overall goal of the Human Genome Educational Model (HGEM) Project is to derive optimal benefit from development of the Human Genome Program for individual and family members (including those from underserved populations) of 90 voluntary genetic support groups and for multi- disciplinary professionals in 25 University Affiliated Programs who provide diagnostic and health services for a broad network of individuals with genetic and nongenetic related disabilities and chronic illnesses. The Aims are: (1) To assess the knowledge, attitudes, experience and practice of a sample of 300 consumers and 300 nongenetic health professionals with regard to the HGP and its ethical, legal and social implications; (2) To use the survey findings to develop a HGEM for consumers and health professionals who provide diagnostic and intervention services for consumers/ potential consumers of genetic services and their families; (3) To use the HGEM (a) to educate 80 consumers and 80 multidisciplinary health professional leaders in two regions of the United States; and (b) to motivate, train and provide resources for the leaders to educate another 600 consumers in 40 local, regional and national genetic support groups and genetic networks as well as 312 professionals in 25 of the UAPs; and (4) To evaluate the effectiveness of the educational activities. A National Advisory Committee will provide continuing input into the planning process of each phase. A vital aspect of implementation is the formation of Regional Coordinating Committees in the two regions to include consumers, genetic professionals, and other health professionals. The HGEM Project is proposed for three years. The HGEM Project is a joint effort of Georgetown University Child Development Center - University Affiliated Program and the Alliance of Genetic Support Groups.