National Information Resource on Ethics & Human Genetics

Walters, Leroy

Abstract

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.