HUMAN GENOME EDUCATION MODEL (HUGEM) PROJECT II

人类基因组教育模型（HUGEM）项目 II

• 批准号: 2889652
• 负责人: E V LAPHAM
• 金额: $ 26.39万
• 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 2001-10-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/2889652
• 关键词: behavioral /social science research tag; education evaluation /planning; ethics; genetic models; genome; health care personnel education; health related legal; human; human data; human population genetics; science education

DESCRIPTION: (Applicant's abstract) The field of medical genetics continues to witness dramatic advances (largely resulting from the Human Genome Project) which have led to an increased demand for genetic services and brought genetics issues to the forefront of health care. While physicians and nurses provide primary medical care for persons with genetic conditions, the allied health professionals (such as nutritionists, occupational therapists, physical therapists, psychologists, social workers, and speech-language pathologists) are often the first to: 1) suspect that their clients have a genetic disorder; 2) give a label to the developmental or behavioral symptoms; 3) recommend further evaluations including genetic testing 4) interpret and discuss results of testing and sometimes give diagnoses; 5) influence attitudes and decisions of their clients about participating in genetic testing or research; 6) provide referrals to other resources such as genetic counseling and genetic support groups; 7) provide counseling related to coping with and adjusting to a genetic condition; and, 9) educate the public about genetic conditions and ELSI issues. Allied health professionals, in general, remain inadequately informed in the area of human genetics and issues related to genetic knowledge, genetic testing, and genetic research. Building on the experiences and products of the Human Genome Education Model Project (1993-1997), Georgetown University Child Development Center-University Affiliated Program (UAP) (Dept. of Pediatrics) and the Alliance of Genetic Support Groups plan to use the collaborative (consumer and health professional) education model to educate allied health professionals through their respective national organizations (American Dietetic Association, American Occupational Therapy Association, American Physical Therapy Association, American Speech-- Language-Hearing Association, American Psychological Association, Council on Social Work Education, and National Association of Social Workers). The overall goal is to derive optimal benefit from development of the Human Genome Project for allied health professionals and the consumers they serve. The specific aims are: 1. to conduct surveys to assess needs, determine education priorities, and identify resources of the respective organizations; 2. to use information from the surveys to adapt the collaborative education model to educate and sensitize health professionals about genetics, the HGP and its ELSI issues and to implement education for national staff, practitioners, and educators; and 3) to evaluate each level of education and disseminate information about the project. HuGEM II is designed to be carried out over a three-year period. An advisory committee will provide expertise in medical genetics, ethics, law, consumer issues, social policy, and health education.

描述：（申请人的摘要）医学遗传学领域仍在继续 见证巨大的进步（主要来自人类基因组） 项目）导致对遗传服务的需求增加 将遗传学问题带到了医疗保健的前沿。 虽然医生 护士为患有遗传疾病的人提供初级医疗护理， 专职医疗保健专业人员（例如营养师、职业 治疗师、物理治疗师、心理学家、社会工作者，以及 言语病理学家）通常是第一个：1）怀疑他们的 客户患有遗传性疾病； 2）给发展或发展贴上标签 行为症状； 3）建议进一步评估，包括遗传 测试 4) 解释和讨论测试结果，有时给出 诊断； 5）影响客户的态度和决定 参与基因检测或研究； 6) 向其他人提供推荐 遗传咨询和遗传支持小组等资源； 7）提供 与应对和调整遗传状况有关的咨询；和， 9) 对公众进行有关遗传状况和 ELSI 问题的教育。 盟军 总体而言，卫生专业人员对该领域的了解仍然不足 人类遗传学以及与遗传知识、基因检测相关的问题， 和基因研究。 以人类的经验和产品为基础 基因组教育模型项目（1993-1997），乔治城大学儿童 发展中心-大学附属项目（UAP）（系） 儿科）和遗传支持小组联盟计划使用 协作（消费者和健康专业人士）教育模式进行教育 联合医疗专业人员通过各自的国家组织 （美国饮食协会、美国职业治疗协会、 美国物理治疗协会，美国言语——语言听力 协会、美国心理学会、社会工作委员会 教育和全国社会工作者协会）。 总体目标是 从人类基因组计划的发展中获得最佳利益 联合医疗专业人员及其服务的消费者。 具体目标 是： 1. 进行调查以评估需求，确定教育 优先事项，并确定各个组织的资源； 2. 到 使用调查信息来调整协作教育模式 教育卫生专业人员并提高其对遗传学、人类基因组计划和 其 ELSI 问题并对本国工作人员实施教育， 从业者和教育者； 3) 评估每个教育水平 传播有关该项目的信息。 HuGEM II 的设计目的是 历时三年进行。 咨询委员会将提供 医学遗传学、伦理学、法律、消费者问题、社会政策、 和健康教育。