NATIONAL INFORMATION RESOURCE ON ETHICS & HUMAN GENETICS

国家伦理学与人类遗传学信息资源（NIREHG）与国家生物伦理学文献参考中心（NRC），生物伦理学信息检索项目和高中生物伦理学课程项目合作，并与主题专家咨询委员会协商，建议：1.继续识别、收集、编目和提供关于遗传研究的伦理、法律的和社会影响（ELSI）的材料，这些材料将存放在NRC中，并编入BIOETHICSLINE数据库;对所有参考文献记录进行标记，这些参考文献是由国家人类基因组研究所（NHGRI）提供资金的;并加强这些ELSI材料的现场可用性，并通过互联网和文件传递。2.通过提供对当地数据库的互联网访问来扩大生物伦理学信息网：遗传学与伦理学，遗传学与法律，并通过链接到乔治，乔治敦大学图书馆的在线图书目录，其中包括所有NRC专著。3.开发NIREHG网站：（a）“真实的”更新ELSI四个范围说明的网络版，即，（B）推出新的信息服务：“伦理学和人类遗传学电子说明”，简要介绍当代电子伦理学和遗传学研究问题，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件的全文，如《剪接生命》，1982年，《遗传条件的筛查和咨询》，并将文本放在网上。5.在NIREHG网站上开发一个全面的、可搜索的链接数据库。6.与肯尼迪研究所的高中生物伦理课程项目合作，编制书目材料，供高中和初中教师和学生使用，并通过NIREHG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.