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

点击翻译按钮获取中文摘要

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.