Education in Genetic Ethics ('EDGE')

路易斯维尔大学的生物伦理、健康政策和法律研究所，以及来自黑斯廷斯中心、斯坦福大学生物医学伦理中心和密歇根州立大学的合作者，提议开发、提供和评估一项名为EDGE的人类遗传学研究伦理培训计划，即遗传学伦理教育。课程的开发将根据在遗传学研究的调查人员的目标受众中进行的大规模国家需求评估，包括院士、临床医生、实验室实践专业人员、遗传咨询师、护士和其他参与人类遗传学研究的人员，对研究伦理培训中确定的未满足的需求作出反应。目标受众将被招募为课程参与者，并将特别努力招募那些传统上在研究伦理领域代表性不足的人。课程参与者将通过为期两天的现场研讨会进行互动教学，每年在美国各地举办六次，并通过计算机媒介进行网络课程。现场课程将包括使用一般伦理原则解决基因研究问题的简短教学课程；小组解决问题和讨论部分涉及遗传学研究伦理问题，使用专门开发的案例研究；由该领域经验丰富的调查人员和学者提供强调该领域历史和发展趋势的全体会议；以及评估会议，以评估获得的研究伦理经验和知识。通过特别开发的网站进行的以计算机为媒介的互动，该网站包括教师提供的电子文本或录音演示选项、在线阅读、异步参与者解决问题的案例研究模块、交互式电子邮件、聊天室和电子板设施、相关网络资源的链接以及在线评估材料。这两门课程，将提供继续教育学分，并且很容易持续。该项目的具体目标是：1)根据未满足的遗传学研究需求，制定一个专门的、可运输的研究伦理培训计划；2)使用现场和在线方法提供EDGE培训计划；3)评估课程的影响。该项目包括一个由遗传学研究和遗传学教育领域的专家组成的课程指导委员会，以及选定的项目团队成员，为项目提供持续的推进。

The Institute for Bioethics, Health Policy, and Law at the University of Louisville, and collaborators from The Hastings Center, Stanford University Center for Biomedical Ethics, and Michigan State University, propose to develop, offer and evaluate a research ethics training program in human genetics called EDGE, or Education in Genetics Ethics. Course development will be responsiveness to identified unmet needs in research ethics training based upon a large scale national needs assessment conducted among a target audience of investigators involved in genetics research, including academicians, clinicians, laboratory practice professionals, genetic counselors, nurses and others involved in human genetics research. he target audience will be recruited as course participants, with special effort made to recruit those who have been traditionally under-represented in the field of research ethics. Interactive instruction for course participants will occur through a 2-day on-site workshop offered at different locations throughout the U.S. six times a year, and a computer-mediated Web-based course. The on-site course will include short, didactic sessions that address genetic research issues using general ethics principles; small group problem-solving and discussion sections involving genetics research ethics issues using specially developed case studies; plenary sessions highlighting historical and developing trends in the field provided by experienced investigators and scholars in the field; and evaluation sessions to assess research ethics experience and knowledge gained. The computer-mediated interaction through a specially developed Web site that includes instructor-provided electronic text or recorded presentation option, on- line readings, asynchronous participant problem-solving case study modules, interactive e-mail, chat room and e-board facilities, links to relevant Web-based resources, and on-line evaluation materials. Both courses, will provide continuing education credit, and are easily sustainable. The specific aims of this project are to: 1) develop a specialized and transportable research ethics training program based upon the unmet needs of genetics research; 2) deliver the EDGE training program using on-site and online methods; and 3) evaluate the impact of the course. The project includes a curriculum steering committee comprised of experts in the field of genetics research and genetics education, as well as select project team members, to provide on-going advance to the project.