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Abstract
Grant Number: 5G13LM009227-02 Project Title: Testifying on Tuskegee: Telling the Tuskegee Syphilis Study Stories
PI Information: Name Title REVERBY, SUSAN M. sreverby@wellesley.edu Abstract: DESCRIPTION (provided by applicant): "The Tuskegee Study of Untreated Syphilis in the Male Negro"-the longest running (1932-72) nontherapeutic experiment in American history-serves as one of the key urtexts for American bioethics, the rationale for institutional review boards, and the oft-repeated symbol for African Americans' fears of the health care system and its power. For forty years, the U. S. Public Health Service (PHS), along with Tuskegee Institute, local and state health departments, studied late stage syphilis in nearly 600 African American men (399 with the disease, 20! controls) in and around Tuskegee, Alabama, by not telling, nor really treating, its "subjects" for their disease. The men, however, were misled into thinking this experiment was treatment. The study is often seen as a racial morality play for many among the African American public and the medical community, serving as our most horrific example of abusive state power in the name of scientific research. It is continuously evoked to demand attention to health needs that are ignored. This project is to complete a book on the multiple stories told about what has become known as "The Tuskegee Study." It is about both the four decades of the Study and the more than three decades since it ended. It provides new facts about what really happened as it asks why some narratives are given voice, while others are suppressed. It explores why certain facts and fictions exist about the Study, how they travel through our culture, and what they tell us about the changing historical connections among race, medicine, experimentation and memory. Building on the newer historiography in Southern, medical and women's history, the approach is to demonstrate why this was not just a formulaic tale of the inevitable clash of those with power and those without, as it is usually told. It explores why Tuskegee has become "hallowed ground" for a civic, rather than civil, battlefield as contentious as any other crucial site in American history. Relevance: The Tuskegee Study is cited continuously as the reason why we need Institutional Review Boards and why African Americans distrust the health care system and do not participate in clinical trials. This book will retell the story of the Study, provide new insight into what happened, and explain why through histories, memories, and cultural forms, we tell the stories we do about the Study. It will explore why we "need" this story told in particular ways and how historical and cultural need shaped the re-tellings.
Public Health Relevance:
This Public Health Relevance is not available.Thesaurus Terms:
syphilis, thinking
antibiotic, attention, belief, blood, book, clinical trial, community, culture, ethics, fear, gait, health, health care, insight, journal, lead, literature survey, male, medicine, memory, morals, motivation, nurse, nursing, penicillin, physician, play, public health, publication, serology /serodiagnosis, travel, voice
clinical research
Institution: WELLESLEY COLLEGE 106 CENTRAL ST WELLESLEY, MA 024818203 Fiscal Year: 2008 Department: WOMEN'S STUDIES Project Start: 15-JAN-2007 Project End: 14-JAN-2009 ICD: NATIONAL LIBRARY OF MEDICINE IRG: ZLM1