African Americans and Health Care Paper.
African Americans and Health Care Paper.
The Tuskegee Syphilis Study continues to cast its long shadow on the contemporary relationship between African Americans and the biomedical community. Numerous reports have argued that the Tuskegee Syphilis Study is the most important reason why many African Americans distrust the institutions of medicine and public health. Such an interpretation neglects a critical historical point: the mistrust pre- dated public revelations about the Tuskegee study. This paper places the syphilis study within a broader historical and social context to demonstrate that several factors have influenced—and continue to influence—African Americans’ atti- tudes toward the biomedical com- munity. (Am J Public Health. 1997;87:1773-1778)
Vanessa Northington Gamble, MD, PhD
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Introduction
On May 16, 1997, in a White House ceremony. President Bill Clinton apolo- gized for the Tuskegee Syphilis Study, the 40-year govemment study (1932 to 1972) in which 399 Black m̂ en from Macon County, Alabama, were deliberately denied effective treatment for syphilis in order to document the natural history of the disease.’ “The legacy of the study at Tuskegee,” the president remarked, “has reached far and deep, in ways that hurt our progress and divide our nation. We cannot be one America when a whole segment of our nation has no trust in America.”^ The president’s comments underscore that in the 25 years since its public disclosure, the study has moved from being a singular historical event to a powerful metaphor. It has come to symbolize racism in medi- cine, misconduct in human research, the arrogance of physicians, and government abuse of Black people.
The continuing shadow cast by the Tuskegee Syphilis Study on efforts to improve the health status of Black Ameri- cans provided an impetus for the campaign for a presidential apology.” Numerous articles, in both the professional and pop- ular press, have pointed out that the study predisposed many African Americans to distrust medical and public health authori- ties and has led to critically low Black participation in clinical trials and organ donation.”
The specter of Tuskegee has also been raised with respect to HIV/AIDS preven- tion and treatment programs. Health educa- tion researchers Dr Stephen B. Thomas and Dr Sandra Crouse Quinn have written extensively on the impact of the Tuskegee Syphilis Study on these programs.^ They argue that “the legacy of this experiment, with its failure to educate the study partici- pants and treat them adequately, laid the
foundation for today’s pervasive sense of black distrust of public health authorities.”*” The syphilis study has also been used to explain why many African Americans oppose needle exchange programs. Needle exchange programs provoke the image of the syphilis study and Black fears about genocide. These programs are not viewed as mechanisms to stop the spread of HIV/AIDS but rather as fodder for the drug epidemic that has devastated so many Black neighborhoods.’ Fears that they will be used as guinea pigs like the men in the syphilis study have also led some African Americans with AIDS to refuse treatment with protease inhibitors.*
The Tuskegee Syphilis Study is fre- quently described as the singular reason behind African-American distrust of the institutions of medicine and public health. Such an interpretation neglects a critical historical point: the mistrust predated pub- lic revelations about the Tuskegee study. Furthermore, the narrowness of such a rep- resentation places emphasis on a single his- torical event to explain deeply entrenched and complex attitudes within the Black community. An examination of the syphilis study within a broader historical and social context makes plain that several factors have influenced, and continue to influence, African Americans’ attitudes toward the biomedical community.
Black Americans’ fears about exploi- tation by the medical profession date back
The author is with the History of Medicine and Family Medicine Departments and the Center for the Study of Race and Ethnicity in Medicine, University of Wisconsin School of Medicine, Madison.
Requests for reprints should be sent to Vanessa Northington Gamble, MD, PhD, University of Wisconsin School of Medicine, 1300 University Ave, Madison, Wl 53706.
This paper was accepted July 24, 1997.
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to the antebellum period and the use of slaves and free Black people as subjects for dissection and medical experimentation.’ Although physicians also used poor Whites as subjects, they used Black people far more often. During an 1835 trip to the United States, French visitor Harriet Mar- tineau found that Black people lacked the power even to protect the graves of their dead. “In Baltimore the bodies of coloured people exclusively are taken for dissec- tion,” she remarked, “because the Whites do not like it, and the coloured people can- not resist.'”” Four years later, abolitionist Theodore Dwight Weld echoed Mar- tineau’s sentiment. “Public opinion,” he wrote, “would tolerate surgical experi- ments, operations, processes, performed upon them [slaves], which it would exe- crate if performed upon their master or other whites.”” Slaves found themselves as subjects of medical experiments because physicians needed bodies and because the state considered them property and denied them the legal right to refuse to participate.
Two antebellum experiments, one car- ried out in Georgia and the other in Alaba- ma, illustrate the abuse that some slaves encountered at the hands of physicians. In the first, Georgia physician Thomas Hamilton conducted a series of brutal experiments on a slave to test remedies for heatstroke. The subject of these investiga- tions. Fed, had been loaned to Hamilton as repayment for a debt owed by his owner. Hamilton forced Fed to sit naked on a stool placed on a platform in a pit that had been heated to a high temperature. Only the man’s head was above ground. Over a period of 2 to 3 weeks, Hamilton placed Fed in the pit five or six times and gave him various medications to determine which enabled him best to withstand the heat. Each ordeal ended when Fed fainted and had to be revived. But note that Fed was not the only victim in this experiment; its whole purpose was to make it possible for masters to force slaves to work still longer hours on the hottest of days.”̂
In the second experiment, Dr J. Mari- on Sims, the so-called father of modem gynecology, used three Alabama slave women to develop an operation to repair vesicovaginal fistulas. Between 1845 and 1849, the three slave women on whom Sims operated each underwent up to 30 painful operations. The physician himself described the agony associated with some of the experiments”: “The first patient I operated on was Lucy. . . . That was before the days of anaesthetics, and the poor girl, on her knees, bore the operation with great heroism and bravery.” This
operation was not successful, and Sims later attempted to repair the defect by placing a sponge in the bladder. This experiment, too, ended in failure. He noted:
The whole urethra and the neck of the bladder were in a high state of inflam- mation, which came from the foreign substance. It had to come away, and there was nothing to do but to pull it away by main force. Lucy’s agony was extreme. She was much prostrated, and I thought that she was going to die; but by irrigating the parts of the bladder she recovered with great rapidity.
Sims finally did perfect his technique and ultimately repaired the fistulas. Only after his experimentation with the slave women proved successful did the physi- cian attempt the procedure, with anesthe- sia, on White women volunteers. •
Exploitation After the Civil War
It is not known to what extent African Americans continued to be used as unwill- ing subjects for experimentation and dis- section in the years after emancipation. However, an examination of African- American folklore at the tum of the century makes it clear that Black people believed that such practices persisted. Folktales are replete with references to night doctors, also called student doctors and Ku Klux doctors. In her book. Night Riders in Black Folk History, anthropologist Gladys-Marie Fry writes, “The term ‘night doctor’ (derived from the fact that victims were sought only at night) applies both to stu- dents of medicine, who supposedly stole cadavers from which to leam about body processes, and [to] professional thieves, who sold stolen bodies—living and dead—to physicians for medical research.'””According to folk belief, these sinister characters would kidnap Black people, usually at night and in urban areas, and take them to hospitals to be killed and used in experiments. An 1889 Boston Her- ald article vividly captured the fears that African Americans in South Carolina had of night doctors. The report read, in part:
The negroes of Clarendon, Williamsburg, and Sumter counties have for several weeks past been in a state of fear and trembling. They claim that there is a white man, a doctor, who at will can make himself invisible, and who then approaches some unsuspecting darkey, and having rendered him or her insensible with chloroform, proceeds to fill up a bucket with the victim’s blood, for the purpose of making medicine. After having drained the
last drop of blood from the, victim, the body is dumped into some secret place where it is impossible for any person to find it. The colored women are so worked up over this phantom that they will not venture out at night, or in the daytime in any sequestered place.”
Fry did not find any documented evi- dence of the existence of night riders. However, she demonstrated through exten- sive interviews that many African Ameri- cans expressed genuine fears that they would be kidnapped by night doctors and used for medical experimentation. Fry concludes that two factors explain this paradox. She argues that Whites, especially those in the rural South, deliberately spread rumors about night doctors in order to maintain psychological control over Blacks and to discourage their migration to the North so as to maintain a source of cheap labor. In addition. Fry asserts that the experiences of many African Ameri- cans as victims of medical experiments during slavery fostered their belief in the existence of night doctors.’* It should also be added that, given the nation’s racial and political climate. Black people recognized their inability to refuse to participate in medical experiments.
Reports about the medical exploita- tion of Black people in the name of medi- cine after the end of the Civil War were not restricted to the realm of folklore. Until it was exposed in 1882, a grave rob- bing ring operated in Philadelphia and pro- vided bodies for the city’s medical schools by plundering the graves at a Black ceme- tery. According to historian David C. Humphrey, southem grave robbers regu- larly sent bodies of southern Blacks to northern medical schools for use as anatomy cadavers.”
During the early 20th century, African-American medical leaders pro- tested the abuse of Black people by the White-dominated medical profession and used their concems about experimentation to press for the establishment of Black- controlled hospitals.’* Dr Daniel Hale Williams, the founder of Chicago’s Provi- dent Hospital (1891), the nation’s first Black-controlled hospital, contended that White physicians, especially in the South, frequently used Black patients as guinea p i g s . ” Dr Nathan Francis Mossell, the founder of Philadelphia’s Frederick Doug- lass Memorial Hospital (1895), described the “fears and prejudices” of Black people, especially those from the South, as “almost proverbial.”^” He attributed such attitudes to southem medical practices in which Black people,”when forced to
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accept hospiital attention, got only the poorest care, being placed in inferior wards set apart for them, suffering the brunt of all that is experimental in treat- ment, and all this is the sequence of their race variety and abject helplessness.”^’ The founders of Black hospitals claimed that only Black physicians possessed the skills required to treat Black patients opti- mally and that Black hospitals provided these patients with the best possible care.̂ ^
Fears about the exploitation of African Americans by White physicians played a role in the establishment of a Black veterans hospital in Tuskegee, Ala. In 1923, 9 years before the initiation of the Tuskegee Syphilis Study, racial tensions had erupted in the town over control of the hospital. The federal government had pledged that the facility, an institution designed exclusively for Black patients, would be run by a Black professional stafif. But many Whites in the area, including members of the Ku Klux Klan, did not want a Black-operated federal facility in the heart of Dixie, even though it would serve only Black people.̂ ^
Black Americans sought control of the veterans hospital, in part because they believed that the ex-soldiers would receive the best possible care from Black physi- cians and nurses, who would be more car- ing and sympathetic to the veterans’ needs. Some Black newspapers even warned that White southerners wanted command of the hospital as part of a racist plot to kill and sterilize African-American men and to establish an “experiment station” for mediocre White physicians.^” Black physi- cians did eventually gain the right to oper- ate the hospital, yet this did not stop the hospital from becoming an experiment sta- tion for Black men. The veterans hospital was one of the facilities used by the United States Public Health Service in the syphilis study.
During the 1920s and 1930s, Black physicians pushed for additional measures that would battle medical racism and advance their professional needs. Dr Charles Garvin, a prominent Cleveland physician and a member of the editorial board of the Black medical publication The Journal of the National Medical Asso- ciation, urged his colleagues to engage in research in order to protect Black patients. He called for more research on diseases such as tuberculosis and pellagra that allegedly affected African Americans dis- proportionately or idiosyncratically. Garvin insisted that Black physicians investigate these racial diseases because “heretofore in literature, as in medicine.
the Negro has been written about, ex- ploited and experimented upon sometimes not to his physical betterment or to the advancement of science, but the advance- ment of the Nordic investigator.” More- over, he charged that “in the past, men of other races have for the large part inter- preted our diseases, often tinctured with inborn prejudices.”^^ African Americans and Health Care Paper.
Fears of Genocide
These historical examples clearly demonstrate that African Americans’ dis- trust of the medical profession has a longer history than the public revelations of the Tuskegee Syphilis Study. There is a collec- tive memory among African Americans about their exploitation by the medical establishment. The Tuskegee Syphilis Study has emerged as the most prominent example of medical racism because it con- firms, if not authenticates, long-held and deeply entrenched beliefs within the Black community. To be sure, the Tuskegee Syphilis Study does cast a long shadow. After the study had been exposed, charges surfaced that the experiment was part of a governmental plot to exterminate Black people.^* Many Black people agreed with the charge that the study represented “noth- ing less than an oflScial, premeditated policy of genocide.”^^ Furthermore, this was not the first or last time that allegations of genocide have been launched against the government and the medical profession. The sickle cell anemia screening programs of the 1970s and birth control programs have also provoked such allegations.^*
In recent years, links have been made between Tuskegee, AIDS, and genocide. In September 1990, the article “AIDS: Is It Genocide?” appeared in Essence, a Black woman’s magazine. The author noted: “As an increasing number of African-Americans continue to sicken and die and as no cure for AIDS has been found some of us are beginning to thitik the unthinkable: Could AIDS be a virus that was manufactured to erase large numbers of us? Are they trying to kill us with this disease?” ^’ In other words, some members of the Black com- munity see AIDS as part of a conspiracy to exterminate African Americans. African Americans and Health Care Paper.
Beliefs about the connection between AIDS and the purposeful destruction of African Americans should not be cavalierly dismissed as bizarre and paranoid. They are held by a significant number of Black people. For example, a 1990 survey con- ducted by the Southern Christian Leader- ship Conference found that 35% of the
1056 Black church members who respond- ed believed that AIDS was a form of geno- cide.^” A New York rimesfWCBS TV News poll conducted the same year found that 10% of Black Americans thought that the AIDS virus had been created in a laboratory in order to infect Black people. Another 20% believed that it could be true.^’
African Americans frequently point to the Tuskegee Syphilis Study as evidence to support their views about genocide, per- haps, in part, because many believe that the men in the study were actually injected with syphilis. Harlon Dalton, a Yale Law School professor and a former member of the National Commission on AIDS, wrote, in a 1989 article titled, “AIDS in Black Face,” that “the government [had] purpose- fully exposed Black men to syphilis.” Six years later, Dr Eleanor Walker, a Detroit radiation oncologist, offered an explanation as to why few AfHcan Americans become bone marrow donors. “The biggest fear, she claimed, is that they will become vic- tims of some misfeasance, like the Tuskegee incident where Black men were infected with syphilis and left untreated to die from the disease.””’ The January 25, 1996, episode of New York Undercover, a Fox Network police drama that is one of the top shows in Black households, also reinforced the rumor that the US Public Health Service physicians injected the men with syphilis.”’* The myth about deliberate infection is not limited to the Black com- munity. On April 8, 1997, news anchor Tom Brokaw, on “NBC Nightly News,” announced that the men had been infected by the govemment.^^
Folklorist Patricia A. Turner, in her book / Heard It through the Grapevine: Rumor and Resistance in African-Atneri- can Culture, underscores why it is impor- tant not to ridicule but to pay attention to these strongly held theories about geno- cide.’* She argues that these rumors reveal much about what African Americans believe to be the state of their lives in this country. She contends that such views reflect Black beliefs that White Americans have historically been, and continue to be, ambivalent and perhaps hostile to the exis- tence of Black people. Consequently, African-American attitudes toward bio- medical research are not influenced solely by the Tuskegee Syphilis Study. African Americans’ opinions about the value White society has attached to their lives should not be discounted. As Reverend Floyd Tompkins of Stanford University Memorial Church has said, “There is a sense in our community, and I think it shall be proved out, that if you are poor or you’re a person
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of color, you were the guinea pig, and you continue to be the guinea pigs, and there is the fiindamental belief that Black life is not valued like White life or like any other life in America.”^’
Not Just Paranoia
Lorene Cary, in a cogent essay in Newsweek, expands on Reverend Tompkins’ point. In an essay titled “Why It’s Not Just Paranoia,” she writes:
We Americans eontinue to value the lives and humanity of some groups more than the lives and humanity of others. That is not paranoia. It is our historieal legacy and a present fact; it influences domestic and foreign policy and the daily interaction of millions of Americans. It influences the way we spend our puhlic money and explains how we can read the staggering statistics on Black A m e r i c a n s ‘ infant mortality, youth mortality, morta African Americans and Health Care Paper.