Symposium and Workshop on Ethical, Legal and Social Implications of the Human Genome Diversity Project to be held February, 1998
Symposium and Workshop on Ethical, Legal and Social Implications of the Human Genome Diversity Project to be held February, 1998
批准号:
9711287
负责人:
Mark Frankel
金额:
$2.1万
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
项目状态:
已结题
起止时间:
1997-09-01 至 1998-08-31
中文摘要
来自多个学科的科学家正在计划一项被称为人类基因组多样性计划(HGDP)的国际科学倡议,以收集、分析和保存来自广泛人群的基因样本。预计HGDP将使重建不同人类群体的起源、关系和进化史成为可能,并帮助我们更好地了解人类群体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,但它是一个有争议的项目。重大的伦理、法律和社会问题已经提出的设计、实施和影响的数据产生的项目。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,数据的机密性,知识产权保护,研究对象的补偿和利益,以及种族歧视。HGDP北美区域委员会已经起草了一份收集DNA样本的示范伦理议定书(MEP),为解决其中一些问题提供了实用指南。美国科学促进会科学自由、责任和法律项目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召开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,这些研究提出的伦理、法律和社会问题,以及环境保护部如何应对这些问题。在此背景下,下午的研讨会将讨论《环境保护计划》的规定和实施策略——其覆盖范围和内容,其作为HGDP研究人员以及评估和资助其提案的人员的一套道德准则的实用性,以及实施其具体规定的策略。关于这次活动的报告将发布在美国科学促进会的网站上。
英文摘要
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.
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会议论文
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