The U.S. Government Denied Treatment and Studied How Syphilis Killed a Group of African American Males
In one of the most notorious medical studies in American history, known as the "Tuskegee Experiment", the U.S. government studied the effects of Syphilis on poor, mostly illiterate African American sharecroppers while denying them treatment. The study became notorious because it was conducted without due care to its subjects, and led to major changes in how patients are protected in clinical studies. Individuals enrolled in the Tuskegee Syphilis Study did not give informed consent and were not informed of their diagnosis; instead they were told they had "bad blood" and could receive free medical treatment, rides to the clinic, meals and burial insurance in case of death in return for participating.
However, It Did Not Give Them The Disease
As notorious and shocking as this study was, the accounts of the study are often exaggerated into the claim that the U.S. government actually gave Syphilis to the patients involved, which is not true.
In 1932, when the study started, standard treatments for syphilis were toxic, dangerous, and of questionable effectiveness. Part of the original goal of the study was to determine if patients were better off not being treated with these toxic remedies.
But by 1947, penicillin had become the standard treatment for syphilis. Prior to this discovery, syphilis frequently led to a chronic, painful and fatal multisystem disease. Rather than treat all syphilitic subjects with penicillin and close the study, or split off a control group for testing penicillin; the Tuskegee scientists withheld penicillin and information about penicillin, purely to continue to study how the disease spreads and kills. Participants were also prevented from accessing syphilis treatment programs that were available to other people in the area. The study continued until 1972, when a leak to the press resulted in its termination.
The Tuskegee Syphilis Study, cited as "arguably the most infamous biomedical research study in U.S. history", led to the 1979 Belmont Report, the establishment of the National Human Investigation Board, and the requirement for establishment of Institutional Review Boards.
(above: The Tuskegee Study Group Letter inviting subjects to receive "special treatment", which was actually a diagnostic lumbar puncture)
Dr. David Feldshuh wrote a stage play in 1992 based on the history of the Tuskegee study, titled Miss Evers' Boys. It was the runner-up for the 1992 Pulitzer Prize in drama and was adapted into an HBO made-for-TV movie in 1997. The adaptation was nominated for twelve Emmy Awards, winning in five categories. Frank Zappa's musical Thing-Fish is loosely inspired by the events.
- U.S. Public Health Service Syphilis Study at Tuskegee
- Final Report of the Tuskegee Syphilis Study Legacy Committee. University of Virginia Health Sciences Library (May 20, 1996). Retrieved on 2007-05-08.
- Katz, Ralph V.; Stefanie L. Russell, S. Steven Kegeles, Nancy R. Kressin (November 2006). "The Tuskegee Legacy Project: Willingness of Minorities to Participate in Biomedical Research". J Health Care Poor Underserved 17 (4): 698–715. Johns Hopkins University Press. PMCID 1780164. Retrieved on 2007-05-07.
- Blumenthal, Daniel S. & Diclemente, Ralph J. (2003), Community-Based Health Research: Issues and Methods, Springer Publishing, pp. 50, ISBN 0826120253, <http://www.google.co.in/books?id=KN_-9lwSI5oC>
- http://www.tuskegee.edu/Global/Story.asp?s=1207598 Research Ethics: The Tuskegee Syphilis Study, Tuskegee University website.
- Parker, Laura. "'Bad Blood' Still Flows In Tuskegee Study", USA Today, April 28, 1997.
- Sharma, Kalpana. "Can clinical trials ever be truly ethical?", The Hindu, December 6, 2005. Retrieved on 2007-05-07. (en)
- 'Bad Blood' Still Flows in Tuskegee Study. Retrieved on 2007-07-24.
- Doctor of Public Health Student Handbook, University of Kentucky College of Public Health, 2004, pp. 17, <http://www.ukcph.org/Portals/0/DoctorofPublicHealth/Dr.P.HStudentHandbook.pdf>
- Bill Jenkins left the PHS in the mid-1970s for doctoral studies. In 1980, he joined the CDC Division of Sexually Transmitted Diseases, where he managed the Participants Health Benefits Program that assured health services for survivors of the Tuskegee Study.
- Elizabeth, Cohen. "Tuskegee's ghosts: Fear hinders black marrow donation", CNN, February 26, 2007. Retrieved on 2007-05-08. (en)
Original Tuskegee Study Papers
- Caldwell, J. G., E. V. Price, et al. (1973). "Aortic regurgitation in the Tuskegee study of untreated syphilis." J Chronic Dis 26(3): 187-94.
- Hiltner, S. (1973). "The Tuskegee Syphilis Study under review." Christ Century 90(43): 1174-6.
- Kampmeier, R. H. (1972). "The Tuskegee study of untreated syphilis." South Med J 65(10): 1247-51.
- Kampmeier, R. H. (1974). "Final report on the "Tuskegee syphilis study"." South Med J 67(11): 1349-53.
- Olansky, S., L. Simpson, et al. (1954). "Environmental factors in the Tuskegee study of untreated syphilis." Public Health Rep 69(7): 691-8.
- Rockwell, D. H., A. R. Yobs, et al. (1964). "The Tuskegee Study of Untreated Syphilis; the 30th Year of Observation." Arch Intern Med 114: 792-8.
- Schuman, S. H., S. Olansky, et al. (1955). "Untreated syphilis in the male negro; background and current status of patients in the Tuskegee study." J Chronic Dis 2(5): 543-58.
Tuskegee Study of Untreated Syphilis in the Negro Male. (2008, February 8). In Wikipedia, The Free Encyclopedia. Retrieved 02:25, February 12, 2008, from http://en.wikipedia.org/w/index.php?title=Tuskegee_Study_of_Untreated_Syphilis_in_the_Negro_Male&oldid=190067911
- Gjestland T. "The Oslo study of untreated syphilis: an epidemiologic investigation of the natural course of the syphilitic infection based upon a re-study of the Boeck-Bruusgaard material," Acta Derm Venereol (1955) 35(Suppl 34):3-368.
- Fred D. Gray, The Tuskegee Syphilis Study: The Real Story and Beyond (Montgomery, Alabama: NewSouth Books, 1998).
- James H. Jones, Bad Blood: The Tuskegee Syphilis Experiment, New York: Free Press, 1981 & 1993.
- The Deadly Deception, by Denisce DiAnni, PBS/WGBH NOVA documentary video, 1993.
- Susan M. Reverby, "History of an Apology: From Tuskegee to the White House," Research Nurse (1998)
- Susan M. Reverby, ed. Tuskegee's Truths: Rethinking the Tuskegee Syphilis Study (University of North Carolina Press, 2000).
- Jean Heller (Associated Press), "Syphilis Victims in the U.S. Study Went Untreated for 40 Years" New York Times, July 26, 1972: 1, 8.
- Thomas, Stephen B. and Quinn, Sandra Crouse, "The Tuskegee Syphilis Study, 1932–1972: Implications for HIV Education and AIDS Risk Programs in the Black Community," American Journal of Public Health (1991) 81: 1503.
- Elof Axel Carlson. "Times of triumph, times of doubt : science and the battle for the public trust " (Cold Spring Harbor Press, 2006) ISBN 0-87969-805-5
- Harriet A. Washington (2007): Medical Apartheid. The Dark History of Medical Experimentation on Black Americans From Colonial Times to the Present
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