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

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)的国际科学倡议，以收集、分析和保存来自广泛人类群体的基因样本。预计HGDP将有可能重建不同人类群体的起源、关系和进化史，并帮助我们更好地理解人类群体差异和疾病易感性的遗传基础。尽管其潜在的科学贡献是巨大的，但HGDP是一个有争议的项目。关于该项目产生的数据的设计、实施和影响，已经提出了重大的伦理、法律和社会问题。这些问题包括对人口的选择、在非西方文化中获得有意义的知情同意的可能性、数据的保密性、知识产权保护、对研究对象的补偿和福利以及种族歧视。HGDP北美区域委员会起草了一份收集DNA样本的示范伦理议定书(MEP)，为解决其中一些关切提供了实用指南。AAAS科学自由、责任和法律项目与宾夕法尼亚大学生物伦理中心合作，将在1998年2月在费城举行的AAAS年会上举办一次为期一天的特别活动。上午的研讨会将讨论HGDP的性质和目标，此类研究提出的伦理、法律和社会问题，以及欧洲议会议长如何应对这些问题。在此背景下，下午的研讨会将讨论执行MEP的条款和战略--其覆盖范围和内容，作为HGDP研究人员及其提案评估和资助人员的一套道德准则的有用性，以及实施其具体条款的战略。此次活动的报道将发布在美国科学促进会的网站上。

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.