NATIONAL INFORMATION RESOURCE ON ETHICS & HUMAN GENETICS

国家伦理与人类遗传学信息资源（NIREHG）与国家生命伦理学文献参考中心（NRC）、生命伦理学信息检索项目和高中生命伦理学课程项目合作，经主题专家咨询委员会的咨询，提出：1。继续对基因研究的伦理、法律和社会影响（ELSI）材料进行鉴定、收集、编目和交付，这些材料将被安置在NRC中，并为BIOETHICSLINE数据库编入索引；标记所有参考文献的书目记录，这些文献由国家人类基因组研究所（NHGRI）资助；并通过互联网和文件传递，提高这些ELSI材料在现场的可用性。2. 增加BIOETHICSLINE，提供互联网访问本地数据库：遗传学和伦理学，遗传学和法律，并通过链接到乔治城大学图书馆的在线图书目录，其中包括所有NRC专著。3. 发展NIREHG网站(a)通过“实时”更新关于ELSI的四个范围注释的网络版本，即每当重要的新文件出现时，(b)引入新的信息服务：“伦理学和人类遗传学电子注释”，它将提供当代ELSI问题的简洁描述，并附有全文、在线资源和其他相关网站的链接。4. 开始扫描关于ELSI问题的经典公共领域文档的全文，例如《剪接生命》，1982年和《遗传条件的筛选和咨询》，并使文本在网络上可用。在NIREHG网站上建立一个全面的、可搜索的链接数据库。6. 与肯尼迪研究所的高中生物伦理学课程项目合作，编制供高中和初中教师和学生使用的书目材料，并通过美国生物伦理学研究中心网站提供。

The National Information Resource on Ethics & Human Genetics (NIREHG), in cooperation with the National Reference Center for Bioethics Literature (NRC), the Bioethics Information Retrieval Project, and the High School Bioethics Curriculum Project, and with the consultation of an Advisory Board of subject matter experts proposes: 1.To continue the identification, collection, cataloging, and delivery of materials on the ethical, legal, and social implications (ELSI) of genetic research to be housed in the NRC and indexed for the BIOETHICSLINE database; to tag all bibliographic records in that refer to documents proposed with funding from the National Human Genome Research Institute (NHGRI); and to enhance the availability of these ELSI materials on-site and via the Internet and document delivery. 2. To augment BIOETHICSLINE by offering Internet access to local databases: Genetics and Ethics, and Genetics and the Law, and by linking to GEORGE, the Georgetown University library's online catalog for books, which includes all NRC monographs. 3. To develop the NIREHG Web site (a) by updating the Web editions of the four Scope Notes on ELSI in "real time," i.e., whenever important new documents appear, and (b) by introducing a new information service: "e-notes in ethics and human genetics," which will provide succinct descriptions of contemporary ELSI issues, accompanied by links to full text, online resources and other related web sites. 4. To begin scanning the full text of classic, public-domain documents on ELSI issues, such as Splicing Life, 1982, and Screening and Counseling for Genetic Conditions, and to make the texts available on the Web. 5. To develop a comprehensive, searchable links database at the NIREHG Web site. 6. To collaborate with the High School Bioethics Curriculum Project at the Kennedy Institute in developing bibliographical materials for use by high-school and middle-school teachers and students made available through the NIREHG Web site.