From 1932 to 1972, the United States Public Health Service conducted a non-therapeutic experiment involving over 400 black male sharecroppers infected with syphilis. The Tuskegee Study had nothing to do with treatment. It purpose was to trace the spontaneous evolution of the disease in order to learn how syphilis affected black subjects. The men were not told they had syphilis; they were not warned about what the disease might do to them; and, with the exception of a smattering of medication during the first few months, they were not given health care. Instead of the powerful drugs they required, they were given aspirin for their aches and pains. Health officials systematically deceived the men into believing they were patients in a government study of "bad blood", a catch-all phrase black sharecroppers used to describe a host of illnesses. At the end of this 40 year deathwatch, more than 100 men had died from syphilis or related complications. "Bad Blood" provides compelling answers to the question of how such a tragedy could have been allowed to occur. Tracing the evolution of medical ethics and the nature of decision making in bureaucracies, Jones attempted to show that the Tuskegee Study was not, in fact, an aberration, but a logical outgrowth of race relations and medical practice in the United States. Now, in this revised edition of "Bad Blood", Jones traces the tragic consequences of the Tuskegee Study over the last decade. A new introduction explains why the Tuskegee Study has become a symbol of black oppression and a metaphor for medical neglect, inspiring a prize-winning play, a Nova special, and a motion picture. A new concluding chapter shows how the black community's wide-spread anger and distrust caused by the Tuskegee Study has hampered efforts by health officials to combat AIDS in the black community. "Bad Blood" was nominated for the Pulitzer Prize and was one of the "N.Y. Times" 12 best books of the year.
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James H. Jones is associate professor of history at the University of Houston. He lives in Houston, Texas. He received his Ph.D. in history from Indiana University and has held a Kennedy Fellowship in Bioethics at Harvard University, served as a senior research fellow at the Kennedy Institute of Ethics at Georgetown University, and recently held senior fellowships from both the National Endowment for the Humanities and the Rockefeller Foundation. He published the first edition of Bad Blood in 1981 to critical acclaim. It was a Main Selection of the History Book Club and a New York Times Best Books of 1981 and has inspired a play, a PBS Nova special, and a motion picture.Excerpt. © Reprinted by permission. All rights reserved.:
"A Moral Astigmatism"
In late July of 1972, Jean Heller of the Associated Press broke the story: for forty years the United States Public Health Service (PHS) had been conducting a study of the effects of untreated syphilis on black men in Macon County, Alabama, in and around the county seat of Tuskegee. The Tuskegee Study, as the experiment had come to be called, involved a substantial number of men: 399 who had syphilis and an additional 201 who were free of the disease chosen to serve as controls. All of the syphilitic men were in the late stage of the disease when the study began.
Under examination by the press the PHS was not able to locate a formal protocol for the experiment. Later it was learned that one never existed; procedures, it seemed, had simply evolved. A variety of tests and medical examinations were performed on the men during scores of visits by PHS physicians over the years, but the basic procedures called for periodic blood testing and routine autopsies to supplement the information that was obtained through clinical examinations. The fact that only men who had late, so-called tertiary, syphilis were selected for the study indicated that the investigators were eager to learn more about the serious complications that result during the final phase of the disease.
The PHS officers were not disappointed. Published reports on the experiment consistently showed higher rates of mortality and morbidity among the syphilitics than the controls. In fact, the press reported that as of 1969 at least 28 and perhaps as many as 100 men had died as a direct result of complications caused by syphilis. Others had developed serious syphilis-related heart conditions that may have contributed to their deaths.
The Tuskegee Study had nothing to do with treatment. No new drugs were tested; neither was any effort made to establish the efficacy of old forms of treatment. It was a nontherapeutic experiment, aimed at compiling data on the effects of the spontaneous evolution of syphilis on black males. The magnitude of the risks taken with the lives of the subjects becomes clearer once a few basic facts about the disease are known.
Syphilis is a highly contagious disease caused by the Treponema pallidum, a delicate organism that is microscopic in size and resembles a corkscrew in shape. The disease may be acquired or congenital. In acquired syphilis, the spirochete (as the Treponema pallidum is also called) enters the body through the skin or mucous membrane, usually during sexual intercourse, though infection may also occur from other forms of bodily contact such as kissing. Congenital syphilis is transmitted to the fetus in the infected mother when the spirochete penetrates the placental barrier.
From the onset of infection syphilis is a generalized disease involving tissues throughout the entire body. Once they wiggle their way through the skin or mucous membrane, the spirochetes begin to multiply at a frightening rate. First they enter the lymph capillaries where they are hurried along to the nearest lymph gland. There they multiply and work their way into the bloodstream. Within days the spirochetes invade every part of the body.
Three stages mark the development of the disease: primary, secondary, and tertiary. The primary stage lasts from ten to sixty days starting from the time of infection. During this "first incubation period," the primary lesion of syphilis, the chancre, appears at the point of contact, usually on the genitals. The chancre, typically a slightly elevated, round ulcer, rarely causes personal discomfort and may be so small as to go unnoticed. If it does not become secondarily infected, the chancre will heal without treatment within a month or two, leaving a scar that persists for several months.
While the chancre is healing, the second stage begins. Within six weeks to six months, a rash appears signaling the development of secondary syphilis. The rash may resemble measles, chicken pox, or any number of skin eruptions, though occasionally it is so mild as to go unnoticed. Bones and joints often become painful, and circulatory disturbances such as cardiac palpitations may develop. Fever, indigestion, headaches, or other nonspecific symptoms may accompany the rash. In some cases skin lesions develop into moist ulcers teeming with spirochetes, a condition that is especially severe when the rash appears in the mouth and causes open sores that are viciously infectious. Scalp hair may drop out in patches, creating a "moth-eaten" appearance. The greatest proliferation and most widespread distribution of spirochetes throughout the body occurs in secondary syphilis.
Secondary syphilis gives way in most cases, even without treatment, to a period of latency that may last from a few weeks to thirty years. As if by magic, all symptoms of the disease seem to disappear, and the syphilitic patient does not associate with the disease's earlier symptoms the occasional skin infections, periodic chest pains, eye disorders, and vague discomforts that may follow. But the spirochetes do not vanish once the disease becomes latent. They bore into the bone marrow, lymph glands, vital organs, and central nervous systems of their victims. In some cases the disease seems to follow a policy of peaceful coexistence, and its hosts are able to enjoy full and long lives. Even so, autopsies in such cases often reveal syphilitic lesions in vital organs as contributing causes of death. For many syphilitic patients, however, the disease remains latent only two or three years. Then the delusion of a truce is shattered by the appearance of signs and symptoms that denote the tertiary stage.
It is during late syphilis, as the tertiary stage is also called, that the disease inflicts the greatest damage. Gummy or rubbery tumors (so-called gummas), the characteristic lesions of late syphilis, appear, resulting from the concentration of spirochetes in the body's tissues with destruction of vital structures. These tumors often coalesce on the skin forming large ulcers covered with a crust consisting of several layers of dried exuded matter. Their assaults on bone structure produce deterioration that resembles osteomyelitis or bone tuberculosis. The small tumors may be absorbed, leaving slight scarred depressions, or they may cause wholesale destruction of the bone, such as the horrible mutilation that occurs when nasal and palate bones are eaten away. The liver may also be attacked: here the result is scarring and deformity of the organ that impede circulation from the intestines.
The cardiovascular and central nervous systems are frequent and often fatal targets of late syphilis. The tumors may attack the walls of the heart or the blood vessels. When the aorta is involved, the walls become weakened, scar tissue forms over the lesion, the artery dilates, and the valves of the heart no longer open and close properly and begin to leak. The stretching of the vessel walls may produce an aneurysm, a balloonlike bulge in the aorta. If the bulge bursts, and sooner or later most do, the result is sudden death.
The results of neurosyphilis are equally devastating. Syphilis is spread to the brain through the blood vessels, and while the disease can take several forms, the best known is paresis, a general softening of the brain that produces progressive paralysis and insanity. Tabes dorsalis, another form of neurosyphilis, produces a stumbling, foot-slapping gait in its victims due to the destruction of nerve cells in the spinal cord. Syphilis can also attack the optic nerve, causing blindness, or the eighth cranial nerve, inflicting deafness. Since nerve cells lack regenerative power, all such damage is permanent.
The germ that causes syphilis, the stages of the disease's development, and the complications that can result from untreated syphilis were all known to medical science in 1932 -- the year the Tuskegee Study began.
Since the effects of the disease are so serious, reporters in 1972 wondered why the men agreed to cooperate. The press quickly established that the subjects were mostly poor and illiterate, and that the PHS had offered them incentives to participate. The men received free physical examinations, free rides to and from the clinics, hot meals on examination days, free treatment for minor ailments, and a guarantee that burial stipends would be paid to their survivors. Though the latter sum was very modest (fifty dollars in 1932 with periodic increases to allow for inflation), it represented the only form of burial insurance that many of the men had.
What the health officials had told the men in 1932 was far more difficult to determine. An officer of the venereal disease branch of the Center for Disease Control in Atlanta, the agency that was in charge of the Tuskegee Study in 1972, assured reporters that the participants were told at the beginning that they had syphilis and were told what the disease could do to them, and that they were given the opportunity to withdraw from the program any time and receive treatment. But a physician with firsthand knowledge of the experiment's early years directly contradicted this statement. Dr. J. W. Williams, who was serving his internship at Andrews Hospital at the Tuskegee Institute in 1932 and assisted in the experiment's clinical work, stated that neither the interns nor the subjects knew what the study involved. "The people who came in were not told what was being done," Dr. Williams said. "We told them we wanted to test them. They were not told, so far as I know, what they were being treated for or what they were not being treated for." As far as he could tell, the subjects "thought they were being treated for rheumatism or bad stomachs." He did recall administering to the men what he thought were drugs to combat syphilis, and yet as he thought back on the matter, Dr. Williams conjectured that "some may have been a placebo." He was absolutely certain of one point: "We didn't tell them we were looking for syphilis. I don't think they would have known what that was."
A subject in the experiment said m...
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