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

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.

来自多个学科的科学家正在计划一项名为人类基因组多样性项目（HGDP）的国际科学计划，以收集、分析和保存来自广泛人群的遗传样本。 预计人类基因组GDP将使人们有可能重建不同人群的起源、关系和进化历史，并帮助我们更好地了解人群差异和疾病易感性的遗传基础。 尽管HGDP的潜在科学贡献是巨大的，但它是一项有争议的事业。 重大的伦理，法律的，社会问题已经提出了有关的设计，实施和项目产生的数据的影响。 这些问题包括对人口选择的关注，在非西方文化中获得有意义的知情同意的可能性，数据保密，知识产权保护，对研究对象的补偿和福利，以及种族歧视。 人类基因组多样化项目北美区域委员会起草了一份《DNA样本采集道德议定书范本》，为解决其中一些关切问题提供实用指南。 美国科学促进会的科学自由、责任和法律方案与宾夕法尼亚大学生物伦理学中心合作，将于1998年2月在费城举行的美国科学促进会年会上举行一次为期一天的特别活动。 上午的专题讨论会将讨论HGDP的性质和目标，这类研究提出的伦理、法律的和社会问题，以及环境保护部如何应对这些问题。 在此背景下，一个下午的讲习班将讨论执行环境保护方案的规定和战略-其覆盖范围和内容、其作为人类基因组多样化项目研究人员和评价其建议并为其提供资金的人员的一套道德准则的用处，以及执行其具体规定的战略。 该活动的报告将张贴在AAAS网站上。