Tuskegee Syphilis Study
Tuskegee Syphilis Study
The Tuskegee Syphilis Study constituted one of the most shameful acts in the history of American medicine. The repercussions of this study, which allowed 400 African American men afflicted with syphilis to go untreated for a period of almost 40 years, are felt to this day. It resulted in new laws governing medical experiments on humans, and—some would argue—a legacy of suspicion of the medical community that continues among many African Americans.
The study began in 1932, at the hospital of the prestigious Tuskegee Institute, a traditionally African American college located in Alabama. The U.S. Public Health Service sponsored it, and white physicians within the public health service administered it. The purpose of the study was to determine the effects of syphilis in African American men. At the time the study began, there was no cure for syphilis, a sexually-transmitted disease that causes sores and rashes in its early stages and serious blood vessel and heart problems, mental disorders, blindness, nerve system problems, and even death in its latter stages.
There were treatments for syphilis available when the study began, but it was decided to withhold even those from participants without their knowledge and chart the course of untreated syphilis in African American males. Four hundred men with syphilis were initially enrolled in the project, mostly poor uneducated African American tenant farmers from the surrounding area, along with 200 uninfected men who served as controls. The first published report of the study was issued in 1936, and reports were issued every four to six years after that.
In the late 1940s, penicillin first became available to the general public as a cure for syphilis. However, the decision was made not to make it available to study participants, who were allowed to continue in the study without any treatment for their disease. They were continually supplied with placebos, and no attempt was made to inform them of possible alternatives to the "medicine" that they were being given. As late as 1969 the Centers for Disease Control recommended the study continue.
Finally in 1972, following unflattering news reports, the study was finally shut down, and those subjects that were still part of the study received penicillin. A report was issued by the Department of Health, Education and Welfare that stated that the study was "scientifically unsound and its results are disproportionately meager composed with known risks to the human subjects involved." The U.S. Congress, led by Senator edward kennedy, held hearings in 1973 on the Tuskegee Syphilis Study.Those hearings resulted in the 1974 passage of the National Research Act of 1974 (42 U.S.C. §§ 201 et seq) which established institutional review and an ethic guidance program for all future research studies done under the auspices of the U.S. government. It stated in part "that each entity which applies for a grant, contract, or cooperative agreement under this chapter for any project or program which involves the conduct of biomedical or behavioral research involving human subjects submit in or with its application for such grant, contract, or cooperative agreement assurances satisfactory to the Secretary that it has established a board (to be known as an Institutional Review Board) to review biomedical and behavioral research involving human subjects conducted at or supported by such entity in order to protect the rights of the human subjects of such research."
In the meantime, a lawsuit was filed in 1973, on behalf of the survivors of the study and the heirs and representatives of the participants who had since died, against the various federal government agencies, the State of Alabama, the private foundation that provided original funding, and individual physicians working for the U.S. Public Health Service. Eventually, a monetary settlement of $10 million was reached with the parties. Each surviving subject was to be paid $37,500, each heir or representative of a diseased subject received $15,000, each member of the control group received $16,000, and the heir or a representative of each control subject received $5,000.
In 1997, in a White House ceremony, President bill clinton apologized for the federal government's role in the Tuskegee Syphilis Study. He spoke of the mistrust and racial animus that resulted from the study to a group of survivors of the study and their families. He added: "We can look you in the eye and finally say on behalf of the American people, what the United States government did was shameful, and I am sorry."
Further readings
Herman, Donald H. J. 2000–01. "Lessons Taught by Miss Evers' Boys: The Inadequacy of Benevolence and the Need for Legal Protection of Human Subjects in Medical Research." Journal of Law and Health 15.
Jones, James H. 1993. Bad Blood: The Tuskegee Syphilis Experiment. New York: Free Press.
Palmer, Larry I. 1997. "Paying for Suffering: The Problem of Human Experimentation." Maryland Law Review 56.
Reverby, Susan M., ed. 2000. Tuskegee's Truths: Rethinking the Tuskegee Syphilis Study. Chapel Hill: Univ. of North Carolina Press.
Cross-references
Patients' Rights.