Education in Genetic Ethics ('EDGE')

路易斯维尔大学生物伦理、卫生政策和法律研究所与黑斯廷斯中心、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或遗传学伦理教育的人类遗传学研究伦理培训计划。课程开发将根据在参与遗传学研究的研究人员的目标受众中进行的大规模国家需求评估，对研究道德培训中确定的未得到满足的需求做出回应，这些目标受众包括院士、临床医生、实验室实践专业人员、遗传顾问、护士和其他参与人类遗传学研究的人。他的目标受众将被招募为课程参与者，特别努力招募那些在研究伦理领域传统上代表性不足的人。为课程参与者提供的互动指导将通过为期两天的现场研讨会和基于计算机的网络课程进行，该研讨会每年在美国不同地点提供六次。现场课程将包括使用一般伦理原则解决遗传研究问题的简短教学会议；利用专门开发的案例研究解决问题和讨论遗传学研究伦理问题的小组会议；由该领域经验丰富的调查人员和学者提供的强调该领域历史和发展趋势的全体会议；以及评估研究伦理经验和获得的知识的评估会议。通过专门开发的网站进行计算机中介互动，该网站包括讲师提供的电子文本或录音演示选项、在线阅读、非同步参与者解决问题的案例研究模块、互动电子邮件、聊天室和电子公告板设施、相关网络资源的链接以及在线评估材料。这两门课程都将提供继续教育学分，而且很容易持续。该项目的具体目标是：1)根据遗传学研究尚未满足的需求，开发一个专门的、可移植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；以及3)评估该课程的影响。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，以不断为该项目提供进展。

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.