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Tuskegee Syphilis StudyThe Tuskegee Syphilis Study (1932-1972) was a medical experiment, conducted around Tuskegee, Alabama, where 400 poor, mostly illiterate black American sharecroppers became part of a study on the treatment of syphilis without their full knowledge. The study was originally started as a study on the effectiveness of contemporary treatments (including Salvarsan, mercurial ointments and bismuth) which were considered harmful and ineffective, and an attempt to show that non-treatment was less harmful. By 1947, penicillin had been recognized as a safe and effective cure for syphilis, yet the remaining members of the Tuskegee group of patients were allowed to sicken and die for another twenty-five years, and some were even actively blocked from effective treatments to allow scientists to study syphilis damage post mortem to better understand how the disease spreads and kills. The Tuskegee Syphilis Study was terminated in 1972, when it was exposed in the press. The Tuskegee Study is widely regarded as one of the greatest failures of American medical ethics, and the subject of a presidential apology after the fact to the survivors and their relatives. This study has become a negative ethical standard against which many other medical studies have been measured. Statistics The study started with 400 infected black men and 200 healthy black men as controls. By 1972, only 74 of the test subjects were still alive. For many participants, treatment was intentionally denied- while patients were lied to, and given a fake placebo treatment - in order to 'observe' the fatal progression of the disease. Between 28 and 100 had died as a direct result of damage caused by syphilis. Many of the rest had already left the study and treated either within or external to the study. Study Termination In 1970, the existence of the study was leaked to the New York Times and became front page headlines. As a result of public outcry, in 1972, an ad hoc advisory panel was appointed which determined the study was medically unjustified, and terminated the study. As part of a settlement of a class action lawsuit subsequently filed by the NAACP, $9 million was given to the study participants and free medical treatment was promised to the survivors and the surviving family members infected as a consequence of the study. In 1974, the National Research Act became law, which created a commission to study and create regulations governing studies involving human participants. On May 16, 1997, with five of the eight remaining survivors of the study attending the White House ceremony, President Bill Clinton formally apologized to Tuskegee study participants. Ethical implications Some believe that the Tuskegee Study has led to a lasting distrust amongst African-Americans of the medical community in general, and medical trials in particular. It has been speculated that this in turn has resulted in under-treatment of African-Americans, and their under-representation in medical trials, in turn leading to poorer medical care for African-Americans for decades to come. Perspectives on the study are not unified. Some critics of the prevailing view argue that, in 1932, treatments for syphilis were ineffective and had very severe side effects. Furthermore, the men were asymptomatic at the time of beginning the trials, and that a majority of patients would have stayed so, even without treatment. At the time the study was started, it was believed that the serious consequences were real, but not universal. (It is now known that "asymptomatic" untreated syphilis causes damage to internal organs including the brain, nerves, eyes, heart, blood vessels, liver, bones, and joints.) Finally, prevailing medical ethics at the time did not have the exacting standards for informed consent currently expected; doctors routinely withheld information about patients' condition from them. Therefore, they argue, that the initial stages of the trial were ethically defensible according to the standards of the time. However, with the development of an effective, simple treatment and the changing ethical standards as time went on, such arguments are not made in regards to the continuing practice of the study in its latter years. The aftershocks of this study led directly to the high standards for human studies used today. References - James H. Jones. Bad Blood: The Tuskegee Syphilis Experiment. New York: Free Press, 1981 & 1993.
- Susan M. Reverby, ed. Tuskegee's Truths: Rethinking the Tuskegee Syphilis Study. University of North Carolina Press, 2000.
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