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20世纪90年代，很明显， 生物医学科学，特别是人类基因组学，将大大 影响法律，医学，公共卫生和我们的许多其他部门 社会 人类基因组计划：科学，法律， 21世纪世纪的社会变革，将汇集300-500 医生、律师、消费者、伦理学家和科学家， 新基因技术的影响，并为未来的挑战做好准备。 由怀特黑德生物医学研究所组织， 与美国法律，医学和伦理学会（ASLME），会议 1998年4月23日和24日，将举行全体会议，讨论（1）信息 遗传学革命;（2）隐私和遗传歧视：对 个人与社会;（3）改变个人和社会的基因 人口。 每次全体会议之后将举行相关的研讨会。 例如，第一次全体会议之后将举行题为 “了解基因检测：医患关系的新挑战 关系”、“医疗记录、隐私和知情同意 后基因组世界”和“遗传学对药物开发的影响：新的 公司对患者记录感兴趣。“在著名律师的带领下， 科学家，医生和伦理学家，这些研讨会将提供一个 研究界和专业人士之间的重要桥梁， 才刚刚开始了解新基因技术的潜在影响。 参与者将离开该计划，对当前的 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），以及 新的见解，如何基因组学革命将影响社会作为一个 整体 会议组织者将传播会议的结果， 通过Whitehead维护的交互式网站， 研究所;基因信（遗传学和公众的互联网通讯 政策于1996年7月在能源部的赠款下开始实施）; ASLME's Journal of Law，Medicine&Ethics;评论文章提交给 领先的科学期刊，如《美国人类遗传学杂志》; 一个专门制作的CD-ROM，将免费分发给医务人员， 法律和全国各地的公共卫生图书馆;和两个后续行动 会议后六个月和十二个月的通讯， 有关立法趋势、最近的司法判决和变化的信息 与遗传学有关的公共卫生政策。