HUMAN GENOME EDUCATION MODEL PROJECT

人类基因组教育模型项目

• 批准号: 2209039
• 负责人: E V LAPHAM
• 金额: $ 14.57万
• 依托单位: GEORGETOWN UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 1993
• 资助国家: 美国
• 起止时间: 1993-09-28 至 1996-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/2209039
• 关键词: data collection methodology /evaluation; ethics; genetic techniques; genome; health administration; health care service utilization; health education; health related legal; health science profession; health science research; health service demonstration project; health surveys; information dissemination; model design /development; public health; social adjustment

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.

人类基因组计划（HGP），目前正在进行的地图和序列的 人类基因组，介绍了一个最重要的发展， 十年来的医疗保健。 在识别和识别方面的快速进展， 在某些情况下，预防和治疗遗传性疾病具有深远的意义， 对患有遗传疾病的人和多- 为他们提供服务的专业卫生人员。 的 人类基因组教育模型（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（包括来自服务不足地区的人） 90个自愿遗传支持团体和多个 25所大学附属项目的学科专业人员， 为广泛的个人网络提供诊断和健康服务 与遗传和非遗传相关的残疾和慢性疾病。 目的是：（1）评估知识，态度，经验， 300名消费者和300名非遗传健康者的样本实践 人类基因组计划及其道德、法律的和社会方面的专业人士 （2）根据调查结果， 消费者和卫生专业人员谁提供诊断和 为消费者/潜在消费者提供的干预服务 （3）利用海地性别平等政策（a）教育80 消费者和80多学科的健康专业领导人在两个 （B）激励、培训和提供 资源的领导人教育另外600名消费者在40个当地， 区域和国家遗传支助小组以及遗传网络 （4）评估25个UAP的312名专业人员;以及 教育活动的有效性。一个国家咨询 委员会将继续为每个项目的规划进程提供投入。 相位 执行工作的一个重要方面是组建区域 两个区域的协调委员会将包括消费者、遗传 专业人员和其他卫生专业人员。HGEM项目是 建议三年。 HGEM项目是一项共同努力， 乔治城大学附属儿童发展中心 遗传支持组织联盟（Alliance of Genetic Support Groups）。