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NLM’s Collection on the US Public Health Service Tuskegee Syphilis Study (Audio Described Version)

In 1932, a study on the effects of untreated syphilis on Black men in Alabama took place, and participants’ informed consent was not collected. After news broke about the study in 1972, an ad hoc federal panel was created to investigate the study. The panel investigated whether the study was justified, should be continued, and if current regulations protected the rights of patients. The final report found the study to be ethically unjustified and that participants were not informed about the nature of their disease, given any effective treatment during the study or later once a highly effective treatment was found. In 1972, the study officially ended after advisement from the panel. The investigation and its subsequent findings led to compensation for the victims and changes in research practices. In 1974, the National Research Act that requires voluntary informed consent became law. In 1979, the Belmont Report highlighted that human research should always have respect for persons, beneficence, and justice. The National Bioethics Advisory Commission reports every two years on the adequacy and uniformity of the Federal rules and policies to protect research participants. In 1973, Dr. R.C. Backus, Executive Secretary of the Tuskegee Syphilis Ad Hoc Advisory Panel, donated to the National Library of Medicine (NLM) photocopies of original correspondence, memoranda, meeting minutes, reports, and scientific articles on the origin, development, and investigation of the US Public Health Service Syphilis Study at Tuskegee. These papers held by NLM constitute a unique historical collection that has informed research led by historians, medical ethicists, and many others across a variety of disciplines. NLM’s stewardship of this collection supports the library’s mission to enable biomedical research, support health care and public health, and promote healthy behavior. Non-AD:    • NLM’s Collection on the US Public Hea...   Consult this finding aid to learn more about this collection: findingaids.nlm.nih.gov/repositories/ammp/resources/2934097r If you wish to study the collection, we welcome you to visit the NLM Reading Room. Learn more about the NLM archives: https://www.nlm.nih.gov/hmd/collectio... Transcript: In 1932, the United States Public Health Service began a study of the effects of untreated syphilis on black men in Macon County, Alabama. Participants’ informed consent was not collected.z “The study initially involved 600 Black men – 399 with syphilis, 201 who did not have the disease. Researchers told the men they were being treated for “bad blood,” a local term used to describe several ailments, including syphilis, anemia, and fatigue. In exchange for taking part in the study, the men received free medical exams, free meals, and burial insurance. Four decades later, on July 25, 1972, Associated Press reporter Jean Heller broke news about the study, prompting the U.S. Department of Health, Education, and Welfare, to appoint an ad hoc panel to investigate. In October 1972, the panel advised stopping the study, and a month later the study was ended. The panel concluded in their final report that the previous research on African Americans with syphilis was “ethically unjustified.” At the study's conclusion, only 74 of the original 600 men were still alive. 40 of their wives had been infected and 19 of their children were born with congenital Syphilis. The Advisory Panel’s investigation led to compensation for the victims of the research and new protocols for the ethical treatment of human subjects of research. Voluntary informed consent for research subjects became the new standard, and an explicit requirement for government-funded research. In 1997, President Clinton issued a formal Presidential Apology for the Tuskegee Syphilis Study. During its investigation, the panel collected a broad variety of historical documents and other papers. In 1973, a copy of the panel’s working papers was deposited in the National Library of Medicine, NLM, located on the campus of the National Institutes of Health, in Bethesda, Maryland. Through this research and related public education made possible by the unique collection held by the NLM, as well as the National Archives, we acknowledge the participants in the Tuskegee study and the injustices they and their families suffered. We also acknowledge the work of the Tuskegee Syphilis Study Ad Hoc Advisory Panel to address the unethical actions of the study which ushered in new protections for the rights of patients, and which continue to evolve with new advances in science and medicine. The NLM collects and preserves collections such as that of the Tuskegee Study Ad Hoc Advisory Panel to improve transparency in research, and to ensure that lessons of the past inform the present and future of biomedical research, health care and public health, and healthy behavior. #tuskegee #audiodescription