Symposium and Workshop on Ethical, Legal and Social Implications of the Human Genome Diversity Project to be held February, 1998

关于人类基因组多样性计划的伦理、法律和社会影响的研讨会和讲习班将于 1998 年 2 月举行

• 批准号: 9711287
• 负责人: Mark Frankel
• 金额: $ 2.1万
• 依托单位: American Association for the Advancement of Science
• 依托单位国家: 美国
• 项目类别: Standard Grant
• 财政年份: 1997
• 资助国家: 美国
• 起止时间: 1997-09-01 至 1998-08-31
• 项目状态: 已结题
• 来源: https://www.nsf.gov/awardsearch/showAward?AWD_ID=9711287&HistoricalAwards=false
• 关键词: Symposium; Workshop; Ethical; Legal; Social; Symposium; Workshop; Ethical; Legal; Social

Scientists from several disciplines are planning an international scientific initiative known as the Human Genome Diversity Project (HGDP) to collect, analyze, and preserve genetic samples from a wide range of human populations. It is expected that the HGDP will make it possible to reconstruct the origins, relationships, and evolutionary history of the different human populations, and to help us better understand the hereditary basis for differences in human populations and susceptibilities to diseases. Although its potential scientific contribution is considerable, the HGDP is a controversial venture. Significant ethical, legal, and social issues have been raised about the design, implementation, and implications of data generated by the Project. These issues include concerns about the selection of populations, the possibilities of obtaining meaningful informed consent in non-western cultures, confidentiality of data, intellectual property protection, compensation and benefits to the research subjects, and ethnic discrimination. The North American Regional Committee of the HGDP has drafted a Model Ethical Protocol for Collecting DNA Samples (MEP) to provide a practical guide for addressing some of these concerns. The AAAS Scientific Freedom, Responsibility and Law Program, in collaboration with the Center for Bioethics at the University of Pennsylvania, is convening a special one-day event at the AAAS Annual Meeting in Philadelphia in February 1998. A morning symposium will discuss the nature and goals of the HGDP, the ethical, legal and social issues raised by such research, and how the MEP responds to those issues. With that as background, an afternoon workshop will address provisions of and strategies for implementing the MEP -- its scope of coverage and content, its usefulness as a set of ethical guidelines for HGDP researchers and those who evaluate and fund their proposals, and strategies for implementing its specific provisions. A report of the event will be posted on the AAAS Web site.

来自几个学科的科学家正在计划一项称为人类基因组多样性项目（HGDP）的国际科学倡议，以收集，分析和保存来自广泛人群的遗传样本。 可以预期，HGDP将有可能重建不同人口的起源，人际关系和进化史，并帮助我们更好地理解人类人群差异和疾病的敏感性的遗传基础。 尽管其潜在的科学贡献是相当大的，但HGDP是一个有争议的冒险。 关于项目产生的数据的设计，实施和含义，已经提出了重大的道德，法律和社会问题。 这些问题包括对人口选择的担忧，在非西方文化中获得有意义的知情同意的可能性，数据机密性，知识产权保护，对研究对象的补偿和福利以及种族歧视。 HGDP的北美区域委员会已起草了一项模型道德协议，用于收集DNA样本（MEP），以提供解决其中一些问题的实用指南。 AAAS科学自由，责任和法律计划与宾夕法尼亚大学的生物伦理学中心合作，在1998年2月在费城举行的AAAS年度会议上召集了一次特别的为期一天的活动。早晨的研讨会将讨论HGDP，道德，法律和社交问题的性质和目标，这些问题由这些问题和社会问题培养，这些问题和社交问题对这些问题以及对这些问题进行了回应，以及这些问题以及这些问题的问题，以及这些问题，以及这些问题，以及这些问题，以及这些问题的问题，以及这些问题，以及这些问题，以及这些问题以及这些问题以及这些问题的评论。 以此为背景，下午的研讨会将解决实施MEP的规定和策略 - 其覆盖范围和内容的范围，其作为HGDP研究人员的一套道德准则以及评估和资助其建议的人的有用性以及实施其特定规定的策略。 该活动的报告将发布在AAAS网站上。