HUMAN GENOME PROJECT--SCIENCE, LAW, AND SOCIAL CHANGE

人类基因组计划——科学、法律和社会变革

• 批准号: 2687666
• 负责人: David C. Page
• 金额: $ 4.43万
• 依托单位: WHITEHEAD INSTITUTE FOR BIOMEDICAL RES
• 依托单位国家: 美国
• 财政年份: 1998
• 资助国家: 美国
• 起止时间: 1998-02-16 至 1999-02-15
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/2687666
• 关键词: biotechnology; ethics; genetic disorder diagnosis; genetic techniques; genetics; genome; health related legal; health science research; meeting /conference /symposium; social change; travel

DESCRIPTION: During the l990s, it has become evident that advances in the biomedical sciences, especially in human genomics, will dramatically influence law, medicine, public health, and many other sectors of our society. The proposed conference, The Human Genome Project: Science, Law, and Social Change in the 21st Century, will bring together 300-500 physicians, lawyers, consumers, ethicists, and scientists to explore the impact of new genetic technologies and prepare for the challenges ahead. Organized by the Whitehead Institute for Biomedical Research, in association with the American Society of Law, Medicine & Ethics (ASLME), the conference on April 23 and 24, 1998, will offer plenary sessions on (1) The Information Revolution in Genetics; (2) Privacy and Genetic Discrimination: Effects on Individuals and Society; and (3) Altering Genes in Individuals and Populations. Each plenary session will be followed by relevant workshops. For example, the first plenary session will be followed by workshops titled "Keeping Abreast of Genetic Tests: New Challenges in the Doctor-Patient Relationship," "Medical Records, Privacy, and Informed Consent in the Post-Genome World," and "The Impact of Genetics on Drug Development: New Corporate Interest in Patient Records." Led by prominent lawyers, scientists, physicians, and ethicists, these workshops will provide an important bridge between the research community and professionals who are just beginning to grasp the potential impact of new genetic technologies. Participants will leave the program with a clear perspective on current challenges raised by genetics in their own fields, extensive background materials, continuing education credits (in medicine, law, and nursing), and new insights into how the genomics revolution will affect society as a whole. The conference organizers will disseminate the results of the conference through an interactive Web site maintained by the Whitehead Institute; The Gene Letter (an internet newsletter on genetics and public policy started in July 1996 under a grant from DOE); a special issue of ASLME's Journal of Law, Medicine & Ethics; review articles submitted to leading scientific journals, such as The American Journal of Human Genetics; a specially prepared CD-ROM to be distributed free-of-charge to medical, law, and public health libraries around the country; and two follow-up newsletters, six and twelve months after the conference, with up-to-date information about legislative trends, recent judicial decisions, and changes in public health policy related to genetics.

描述：在L990S期间，已经很明显 生物医学科学，尤其是人类基因组学，将显着 影响法律，医学，公共卫生以及我们的许多其他部门 社会。 拟议的会议，《人类基因组计划：科学，法》， 和21世纪的社会变革将汇集300-500 医师，律师，消费者，伦理学家和科学家探索 新的遗传技术的影响，并为未来的挑战做准备。 由怀特黑德生物医学研究所组织的 与美国法律，医学与道德学会（ASLME），会议 1998年4月23日和24日，将提供有关（1）信息的全体会议 遗传学革命； （2）隐私和遗传歧视：对 个人和社会； （3）改变个体的基因，以及 人群。 每个全体会议都将进行相关的讲习班。 例如，第一次全体会议将在题为“ “保持基因检测：医生的新挑战 关系，“”医疗记录，隐私和知情同意 基因组世界，”和“遗传学对药物开发的影响：新 对患者记录的公司兴趣。”由著名律师领导， 科学家，医师和伦理学家，这些研讨会将提供 研究社区与专业人士之间的重要桥梁 刚刚开始掌握新的遗传技术的潜在影响。 参与者将对当前有清晰的视角离开该计划 遗传学在自己的领域提出的挑战，广泛的背景 材料，继续教育学分（医学，法律和护理中）以及 关于基因组革命将如何影响社会作为一个的新见解 所有的。 会议组织者将传播 通过Whitehead维护的​​交互式网站会议 研究所;基因信（有关遗传学和公众的互联网通讯 政策始于1996年7月，根据DOE的赠款）；特刊 ASLME的法律，医学与道德杂志；审查提交给的文章 领先的科学期刊，例如《美国人类遗传学杂志》； 专门准备的CD-ROM，可免费分配给医疗， 法律和全国公共卫生图书馆；和两个随访 会议结束后的六个月和十二个月，新闻通讯与最新 有关立法趋势，最近的司法决策和变化的信息 与遗传学有关的公共卫生政策。