Contributing to history: Our role in the work of the Presidential Commission for the Study of Bioethical Issues

1. In late 2010, the Presidential Commission for the Study of Bioethical Issues (the Commission) was charged by President Obama to investigate the specifics of U.S. Public Health Service’s sexually transmitted diseases research conducted in Guatemala from 1946-1948. This research involved the intentional exposure and infection with STD agents in vulnerable populations. It was expected that the report would be completed within nine months. Further, the Commission was charged to conduct a review of current research studies involving human subjects. Commission staff requested NIH Library (NIHL) assistance to conduct searches of the scientific and grey literature on the role of human subjects in historical and contemporary research. Contributing to history: Our role in the work of the Presidential Commission for the Study of Bioethical Issues Who is the Commission? What we did. Final Commission reports The Commission is an advisory panel of the nation’s leaders in medicine, science, ethics, religion, law, and engineering. The Commission advises the President of the United States on bioethical issues arising from advances in biomedical and related areas of science and technology. The Commission seeks to identify and promote policies and practices that ensure scientific research, health care delivery, and technological innovations are conducting in a socially and ethically responsible manner. The Commission is one of 14 offices in the U.S. Department of Health and Human Services’ (HHS) Office of the Assistant Secretary for Health (ASH) staff division. • From January - September 2011 the NIHL services included: attending Commission meetings, in-depth literature searching, training in the use of library resources and EndNote, and document delivery. • In-depth literature searches were conducted on: • Databasessearched: Medline, Scopus, Web of Science, EthxWeb, LILACS, JSTOR, EMBASE, ProQuest, Sociological Abs, WORLDCAT and grey literature sources. Index Medicus – the Quarterly Cumulative Index to Current Literature 1916-1926, the Quarterly Cumulative Index Medicus (QCIM) 1927-1956, and the Current List of Medical Literature (CLML) 1941-1959 were hand searched. 30 journals were also individually searched for key topics. • EndNotewas used to collect, manage, and organize search results. Follow-up searches were conducted at the end. • “Ethically Impossible” STD Research in Guatemala from 1946 to 1948 was released in September 2011 and received widespread media attention in the United States and internationally. • Moral Science: Protecting Participants in Human Subjects Research was released in December 2011. The Commission & NIH Library • The assistance provided by Nancy Terry and others at the NIHL in obtaining difficult to locate key documents were directly acknowledged in the Ethically Impossible report, thereby demonstrating the impact and value of the services provided by the librarians and library. In addition, Commission staff visited the library to personally to thank the Library staff and to give a presentation on the reports. • The NIHL provides access to licensed journals and databases, and informationist services to select HHS divisions. A NIHL informationist was assigned to each of the Commission’s reports (Guatemala/NT; HSR/AL)