Digitized Document Collection from U.S. Public Health Service (USPHS) Untreated Syphilis Study at Tuskegee Now Publicly Available Through National Library of Medicine (NLM)
From the National Library of Medicine:
A collection of reproduced documents from the 1932 study by the U.S. Public Health Service (USPHS) on the effects of untreated syphilis in Black men at Tuskegee Institute is now available as a digitized collection through the National Library of Medicine (NLM). The USPHS Untreated Syphilis Study at Tuskegee was conducted without informed consent and led to major reforms to protect participants in biomedical research. The digitized collection, which can be viewed as part of NLM’s Digital Collections, was made possible through permission from Fisk University, Nashville, a historically Black university, which holds a portion of original documents at the John Hope and Aurelia E. Franklin Library, Special Collections, Julius Rosenwald Fund Archives. NLM is part of the National Institutes of Health. NIH has worked with Fisk University to make these important documents, previously only available in their physical form, more broadly available to ensure this chapter in history is never repeated and build greater trust in current biomedical research through transparency.
The USPHS is part of the Department of Health and Human Services. HHS and its divisions, including NIH, take very seriously our responsibility to ensure the ethical conduct of the studies we support. Additionally, HHS established the Office for Human Research Protections to provide leadership in the protection of the rights, welfare, and wellbeing of those involved in HHS-conducted or -supported human research. HHS and its divisions have built mechanisms into our review, funding, and management of projects to ensure that research participants are protected and that a study like the USPHS Untreated Syphilis Study at Tuskegee will never happen again.
The collection, which consists of more than 3,000 reproduced copies of correspondence, memoranda, meeting minutes, reports, and scientific articles, constitutes a distinct historical record that has informed research led by historians, medical ethicists, and many others across a variety of disciplines. NLM’s stewardship of this collection supports its mission to enable biomedical research and support health care and public health through free online access to scholarly biomedical literature.
About the Study
In 1932, a study began on the effects of untreated syphilis on Black men in Alabama. Researchers conducting the study did not obtain informed consent from participants and did not offer treatment, even after it was widely available. In 1972, an ad hoc federal panel was created to investigate the study. The final report found the study to be ethically unjustified and that participants were not informed about the nature of the disease and given treatment 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 victims of the research and major changes in research practices.
In 1973, Dr. R.C. Backus, Executive Secretary of the Ad Hoc Advisory Panel, donated to NLM photocopies of the original documents on the origin, development, and investigation of the USPHS Untreated Syphilis Study at Tuskegee. In making this collection more widely available, NIH is recognizing the participants in the USPHS study and the injustices they and their families suffered. NIH also recognizes the work of the Ad Hoc Advisory Panel to address the unethical actions of the study which ushered in new protections for the rights of research participants.
The NLM collects, preserves, and makes publicly available collections such as that of the USPHS Untreated Syphilis Study at Tuskegee to advance open access, improve transparency in research, and ensure that lessons of the past inform the present and future of biomedical research, health care, public health, and healthy behavior.
Direct to Digital Collection
About Gary Price
Gary Price (firstname.lastname@example.org) is a librarian, writer, consultant, and frequent conference speaker based in the Washington D.C. metro area. He earned his MLIS degree from Wayne State University in Detroit. Price has won several awards including the SLA Innovations in Technology Award and Alumnus of the Year from the Wayne St. University Library and Information Science Program. From 2006-2009 he was Director of Online Information Services at Ask.com.