Lessons Taught by Miss Evers' Boys: The Inadequacy of Benevolence and the Need for Legal Protection of Human Subjects in Medical Research

Legal regulation and ethical constraints on medical research are again at the forefront of public policy concerns. The reported deaths of a volunteer in a gene therapy research program at the University of Pennsylvania and of a participant in an asthma experiment at the Johns Hopkins Medical Center have raised issues of the adequacy of government surveillance of medical research and the adequacy of current practices eliciting voluntary informed consent from research participants. (2) The recognition of the need for legal constraints on medical research and for protection of human subjects was greatly influenced by the reports of the research conducted by Nazi doctors and scientists. (3) While no one denies the atrocities committed under the guise of medical research in the Third Reich, there has also been recognition of the significant abuse of research subjects in the United States, most recently in the reports of the Federal Advisory Committee on Human Radiation experiments. (4) Perhaps the most publicized research involving failure to protect human subjects in medical research is the Tuskegee Syphilis Study (5) which provides the subject matter of the film Miss Evers' Boys. (6) The movie Miss Evers' Boys is a fictionalized narrative based on the Tuskegee Study of Untreated Syphilis in the Negro Male, a project sponsored by the United States Public Health Service that was initiated in 1932 to determine whether the effects of syphilis in black men paralleled the reports of the effects of this venereal disease in Caucasian men in a Norwegian study conducted in Oslo between 1891 and 1910. (7) The Tuskegee Syphilis Study was authorized by the United States Public Health Service to observe a number of black men infected with syphilis who were living in Macon County, Alabama. (8) The purpose of the project, which was run through a clinic associated with the Tuskegee Institute, was to determine the natural course of untreated syphilis in black males and "the difference in historical and clinical course of the disease in black versus white subjects." (9) Four hundred men with syphilis were initially enrolled in the project, along with 200 uninfected men who served as controls. (10) The first published report of the study appeared in 1936 (11) followed by reports provided every four to six years until 1960. (12) Although penicillin became generally available in 1950, the infected subjects were not given penicillin. (13) As late as 1969, the Centers for Disease Control recommended continuation of the study without any treatment for syphilis being provided to the research subjects. (14) The study was halted in 1972 and those subjects still living were given penicillin following publication of newspaper stories critical of the Tuskegee Study in the various newspapers, including the New York Times. (15) The film Miss Evers' Boys portrays the transformation of a government sponsored syphilis treatment program .into a clinical research project in 1932 in which existing treatments were to be withheld and later discovered treatments were not offered to the research subjects. (16) The program continued until 1972 despite the widespread acknowledgment of the effectiveness of penicillin in treating the disease by the late 1940's. (17) A 1973 Senate hearing provides the background setting for the film's principal character, nurse Eunice Evers' testimony about the history of the project and her view of the ultimate justification of the role she played, along with that of the directing physicians. (18) In the film, Miss Evers recalls her initial recruitment into the treatment program in 1932. (19) Dr. Eugene Brodus, an African-American physician working in the clinic at the Tuskegee Institute, was himself invited to join in the research project by Dr. John Douglas, a white physician who was assigned by the Public Health Service to administer a private foundation financed syphilis treatment program. …