With support from the National Human Genome Research Institute, the National Information Resource on Ethics and Human Genetics (NIREHG), established in 1994 through a federal grant to LeRoy Walters from NIH’s ELSI Program, has preserved both the GenETHX database (with more than 40,000 bibliographic citations), along with four major Scope Notes (updated, selected, annotated bibliographies). The Scope Notes cover: 1) Eugenics, 2) Genetic Testing and Genetic Screening, 3) Human Gene Transfer Research, and 4) The Human Genome Project.
In the past year, Bioethics Research Library experts Martina Darragh, Kathy Schroeder, and Richard Anderson brought the four Scope Notes up to date, in consultation with Maddelena Tilli-Schiffert (from Georgetown University’s Biology Department) and Maggie Little (KIE Director, who carried out the final editorial review). The BRL team, together with Katherine Record and Melissa Bourne (from the Georgetown University Law Center), also generated, tested, and refined search strategies on these four issues on major bibliographic databases ranging from Academic Search Premier to WorldCat. The search tips are included in each Scope Note.
The full text of the Scope Notes (together totaling almost 200 pages of reference research) is available both through Bioethics Research Library’s “Genetics and Ethics” page, as well as the newly-launched Digital Georgetown site at Lauinger Library. GenETHX data was also converted and uploaded to OCLC’s OAIster service, made freely available worldwide. Lauinger’s Shu-Chen Tsung and Salwa Ismail provided technical support for the preservation project.