2017-18 JOHN NEAR GRANT Recipient Bad Blood: Racialized Medicine and Scientific Self-Regulation in the Tuskegee Syphilis Experiment Amy Jin, Class of 2018
Bad Blood: Racialized Medicine and Scientific Self-Regulation in the Tuskegee Syphilis Experiment
Amy Jin 2018 John Near Scholar Mentors: Mr. Mark Janda, Ms. Susan Smith April 11, 2018
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In 1932, the United States Public Health Service (PHS) initiated what would come to be a 40-year-long experiment, the infamous “Tuskegee Study of Untreated Syphilis in the Negro Male,” to study the natural history of syphilis in 399 unwitting African American men. By withholding treatment and letting the disease run its course in their subjects’ bodies, the PHS physicians hoped to prove that blacks, in comparison to whites, were more prone to cardiovascular syphilis than neurosyphilis because they had primitive brains and were thus more resistant to nervous system damage. Tracing the historical evolution of medical ethics and scientific racism, the racist roots of the experiment will be explored and contextualized to investigate the impetus that could explain why it took the medical community and United States government 40 years to address the ethical issues brought to light in the experiment. While the Tuskegee Syphilis Experiment attempted to prove a Darwinian conjecture of racially determined resistance to nervous infection, medical paternalism and influences of race, gender, and class, especially as exemplified through key figure Nurse Eunice Rivers, propelled the studies forward from 1932 to 1972, eclipsing moral judgment of the medical community and the United States government. “A Notoriously Syphilis-Soaked Race”: Racial Dimorphism of Disease and Medical Distinctiveness Curiously, although the Tuskegee Syphilis Experiment devolved into an experiment charged with racist incentives from whence it gains its infamous reputation, it was founded on benevolent grounds. In 1928, Dr. Hugh S. Cumming, who at the time served as fifth Surgeon General of the United States, surveyed syphilis prevalence among black employees at the Delta and Pine Land Company of Mississippi, discovering that a quarter of the 2,000 participants
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tested positive.1 He appealed to the Julius Rosenwald Fund in July 1929, a Chicago-based philanthropy that strove to elevate the welfare of blacks, proposing to investigate the effects of a mass syphilis treatment program just for a few months.2 Receiving $20,000 in total as well as the backing of the PHS, Dr. Cumming took his findings from the Wassermann survey to motivate a treatment demonstration.3 After administering treatment, consisting of arsphenamine (salvarsan) and mercury ointment, despite medicinal shortages and high operating costs, he was met with promising results. Employers at the company cited improved worker performance and attendance, supporting the institution of widespread syphilis treatment.4 As a result of this finding, the Rosenwald Fund directed another $50,000 to this initiative, expanding the syphilis control program to six counties in the southern United States, one of which was Macon County, Alabama.5 With an alarming 36 percent, Macon County had the highest syphilis rates among the residents who were tested.6 However, the Great Depression struck before the treatment phase commenced. With the Rosenwald Fund no longer able to fund the program, the PHS was on the verge of discontinuing the project. Concurrently, Dr. Cumming’s surveys revealed that syphilis rates in blacks were significantly higher than those in whites, suggesting possible racial disparities between the influence of syphilis on its hosts.
1
James H. Jones, Bad Blood: The Tuskegee Syphilis Experiment, new and expanded ed. (New York: Free Press, 1993), 54. 2
Michael V. Uschan, Forty Years of Medical Racism: The Tuskegee Experiments (Detroit: Lucent Books, 2006), 15.
3
Jones, Bad Blood, 57.
4
Uschan, Forty Years, 18.
5
Ibid.
6
Jones, Bad Blood, 74.
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The standard explanation for such a statistical difference at the time was that blacks were physically and mentally inferior to whites and consequently more susceptible to disease, as they did not take the necessary precautions to protect their health.7 The Journal of the American Medical Association presented the widely held belief that blacks were sexually promiscuous: “The negro springs from a southern race, and as such his sexual appetite is strong; all of his environments stimulate this appetite, and as a general rule his emotional type of religion certainly does not decrease it.”8 Physician Dr. Daniel D. Quillian of Athens, Georgia, echoed this sentiment, attributing the high rates of syphilis among blacks to their inborn immoral nature, remarking, “Virtue in the negro race is like angels’ visits—few and far between. In a practice of sixteen years I have never examined a virgin negro over fourteen years of age.”9 In this sense, the spirochete bacteria that causes syphilis and its means of transmission were confounded with one another. In other words, physicians preyed on the observation that syphilis was acquired through sexual intercourse in drawing conclusions on black sexuality, hyperbolizing their libido while ignoring the critical issue of congenital syphilis.10 Acquisition of a disease was attributed to characteristics broadly attached to race. Perhaps such egregiously racist claims are not surprising considering the racial atmosphere of the era. Just as the discrepancy between syphilis rates among black and white populations was deemed a sign of the inferiority of blacks, with the white southern medical community searching for fundamental biological racial differences that caused this dimorphism
7
Ibid., 25-26.
Henry H. Hazen, “Syphilis in the American Negro,” Journal of the American Medical Association 63, no. 6 (August 8, 1914): 463, accessed January 17, 2018. 8
Daniel David Quillian, “Racial Peculiarities: A Cause of the Prevalence of Syphilis in Negroes,” American Journal of Dermatology and Genito-Urinary Diseases 10 (July 1906): 277. 9
10
Jones, Bad Blood, 23.
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of syphilis, census data was scrutinized to predict the progression—or, rather, regression—of the black race. PHS physician Dr. Thomas W. Murrell wrote, “So the scourge sweeps among them. Those that are treated are only half cured, and the effort to assimilate a complex civilization driving their diseased minds until the results are criminal records. Perhaps here, in conjunction with tuberculosis, will be the end of the negro problem. Disease will accomplish what man cannot do.”11 Such forecasts aligned with a theory of racial extermination that eugenicists put forth, referring to syphilitics, including sexually promiscuous blacks, as they affirmed that such a development was advantageous for the rest of humanity.12 Over a century ago, esteemed Boston physician Dr. Oliver Wendell Holmes keenly pointed out that “medicine, professedly founded on observation, is as sensitive to outside influence, political, religious, philosophical, imaginative, as is the barometer to the atmospheric density.”13 Pervasive nineteenth-century racial attitudes no doubt influenced the way white physicians perceived and responded to black illnesses. Although the medical establishment was divided, lacking consensus on explanations for the cause of diseases as well as appropriate treatments, physicians all agreed on one note—that the physiology of blacks was believed to be inferior due to the notion of a racial hierarchy, which could necessitate that the health of blacks be treated in a different manner than that of whites. Sharing the racist beliefs that most white Americans had, physicians were intrigued to study the relationship between blacks’ physical differences and their innate being, whether to prove their inferior mental capabilities or ascribe certain traits that reflected their lesser status. From their hair, to gait, to odor, almost no part of
11
Harriet A. Washington, Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present (New York: Anchor Books, 2008), 160. Mike Stobbe, Surgeon General’s Warning: How Politics Crippled the Nation’s Doctor (Berkeley: University of California Press, 2014), 86. 12
13
Jones, Bad Blood, 16.
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their physical bodies escaped the scrutiny of the medical community. One important note to make is that most physicians who wrote on the topic of black health at the time were southerners who believed in the notion of a racial hierarchy.14 As racist attitudes bolstered the Darwinian social hierarchy and saturated the medical community in the early twentieth century, they provided the breeding grounds for pseudoscientific theories of race, including the concept of racial resistance to nervous infection on which the Tuskegee Syphilis Experiment was premised. As captured by professor of physical diagnosis Dr. W. T. English’s comment that a “careful inspection reveals the body of the negro a mass of minor defects and imperfections from the crown of the head to the soles of the feet,” pseudoscientific theories formed in support of the view that blacks were biologically inferior.15 Two prominent authors of racist theories in the mid-nineteenth century were Dr. Josiah Clark Nott of Mobile and Dr. Samuel A. Cartwright of New Orleans, who published a number of articles on conditions and traits that uniquely affected the black race, such as the dirt-eating disease Cachexia Africana and “Negro consumption” Struma Africana.16 Additionally, the dimensions of their craniofacial structures were measured to indicate that they belonged to the lowest rung of the Darwinian hierarchy. Pivotal works such as Samuel George Morton’s magnum opus Crania Americana paralleled the emergence of phrenology as a science. In examining thousands of skulls and classifying them based on race, Morton concluded that cranial capacity reflected intellectual ability and could be distinguished based on race. In the following excerpt, Morton relates the characteristics of European skulls to the natural superiority of whites:
14
Ibid., 16-17.
Allan M. Brandt, “Racism and Research: The Case of the Tuskegee Syphilis Study,” The Hastings Center Report 8, no. 6 (December 1978): 21. 15
16
Jones, Bad Blood, 17.
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The skull is large and oval, and its anterior portion full and elevated. The face is small in proportion to the head, of an oval form, with well-proportioned features … This race is distinguished for the facility with which it attains the highest intellectual endowments … The spontaneous fertility of this tract has rendered it the hive of many nations, which extending their migrations in every direction, have peopled the finest portions of the earth, and given birth to its fairest inhabitants.17 In contrast, in the passage below, Morton delineates the skulls of Africans and dissects their physical qualities in relation to the inferiority of blacks: Characterized by a black complexion, and black, woolly hair; the eyes are large and prominent, the nose broad and flat, the lips thick, and the mouth wide; the head is long and narrow, the forehead low, the cheekbones prominent, the jaws protruding, and the chin small. In disposition the Negro is joyous, flexible, and indolent; while the many nations which compose this race present a singular diversity of intellectual character, of which the far extreme is the lowest grade of humanity.18 Such evidence of racially dimorphic traits parallel the myth of medical distinctiveness as it pertains to syphilis, holding that the disease manifested differently in blacks than in whites. With this hypothesis of a divergent “white” and “black” syphilis, physicians believed they were on the path to explaining why blacks were what they claimed a “notoriously syphilis-soaked race.”19 These racist theories provided the backdrop of the Tuskegee Syphilis Experiment. Coupled with the Great Depression and the Rosenwald’s defunding of the Experiment, they
17
Samuel George Morton, Crania Americana; Or, a Comparative View of the Skulls of Various Aboriginal Nations of North and South America. To Which Is Prefixed an Essay on the Varieties of the Human Species (London: Simpkin, Marshall & Co., 1839; London: Forgotten Books, 2012), 5-7. 18
Ibid., 6-7.
19
Stobbe, Surgeon General’s, 86.
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cultivated a ready-made situation that spawned the study. As noted by both Dr. Taliaferro Clark, the assistant Surgeon General heading the Venereal Disease division of the PHS, and Dr. Cumming, a large cohort of untreated subjects infected with syphilis offered an “unparalleled opportunity” for examining the spontaneous evolution of syphilis in a group of blacks.20 In fact, the Tuskegee physicians established a comparative purpose to conduct their study on their 600 recruited unwitting participants. In the 1920s, researchers in Oslo, Norway had conducted a study of the progression of syphilis in only white patients. Despite the fact that the researchers stressed the importance of treatment for latent syphilis and that the study consisted of a retrospective examination of medical records of whites who did not receive treatment, the Tuskegee physicians saw the Oslo Study as a justification to proceed with their experiment that would further document the natural course of syphilis in blacks. There was, however, a widely circulated article published by Dr. Ernest Zimmerman in 1921 that had already compared the progression of syphilis in blacks to that in whites. Observing 1,843 syphilitic patients at Johns Hopkins University’s charity clinic, he concluded that blacks were more likely to suffer from bone and cardiovascular syphilis, while higher incidences of neurosyphilis appeared in whites. 21 While physicians at times were faithful to their observations, their reported results were prone to being infused with racial prejudice. Discourse concerning malaria in blacks offers a prime example. In some cases, blacks were noted to be less susceptible to malaria, as they suffered milder illnesses. Yet physicians applied this observation to the entire race and argued that this physical peculiarity provided reason for blacks to be sent into the rice fields and
“The Tuskegee Syphilis Experiment,” in 1930-1939, ed. Cynthia Rose, vol. 4, American Decades Primary Sources (Detroit: Gale, 2004), 546-49. 20
Ernest L. Zimmermann, “A Comparative Study of Syphilis in Whites and in Negroes,” Archives of Dermatology and Syphilology 4, no. 1 (July 1921): 78, 88, accessed January 17, 2018. 21
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canebrakes. They believed relative immunity to malaria justified exploitation of black labor and the associated exposure to disease.22 Indeed, most physicians at the time even defended the “peculiar institution” of slavery as a benefit to blacks, insisting that they benefited as wards of the Western health care system who gained protection from the disease-ridden brutish landscapes of their homeland. As census data augured what physicians and anthropologists viewed as the race’s fateful trek to extinction, in particular, following Emancipation Proclamation, the Ninth (1870), Tenth (1880), and Eleventh (1890) Census reported declining birth rates and increasing mortality rates of blacks.23 With syphilis, there had been proposals in the past to suggest that the disease progressed more aggressively in blacks than in whites. Generally, researchers were curious to study medical distinctiveness as it applied to syphilis. Dr. J. E. Moore called the 1928 Oslo Study “a never-tobe-repeated human experiment” but also claimed “[s]yphilis in the negro [to be] in many respects almost a different disease from syphilis in the white.” Turns out, it was not just a statistical difference in syphilis rates between races that spurred an interest in examining the natural history of the disease in hundreds of black subjects but yet another pseudoscientific theory, the neurosyphilis paradox. By withholding treatment and letting the disease run its course, the PHS physicians hoped to prove that blacks, in comparison to whites, were more prone to cardiovascular syphilis than neurosyphilis because they have primitive brains and are thus more resistant to nervous system damage.24 Once again, a biological trait was broadly assigned to blacks to prove their inherent intellectual inferiority. Yet, the actual findings of the reports Todd L. Savitt, “Sickle Cell and Slavery: Were Blacks Medically Different from Whites?” Unpublished paper presented at the Southern Historical Association Meeting (November 1975): 1-15. 22
23
Jones, Bad Blood, 20.
Christopher Crenner, “The Tuskegee Syphilis Study and the Scientific Concept of Racial Nervous Resistance,” Journal of the History of Medicine and Allied Sciences 67, no. 2 (April 2012): 253. 24
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indicated high levels of neurosyphilis in blacks that were instead twisted to artificially reduce percentages of neurosyphilis instances to support the original hypothesis. Ironically, the Tuskegee Syphilis Experiment stemmed from altruistic intentions, in partnership with the Rosenwald Fund, and demonstrated the promise of mass treatment of syphilis. However, it is even more surprising to find that the physicians who initiated the experiment held relatively more progressive views about blacks and syphilis at the time. For example, Dr. Thomas Parran, PHS physician and sixth Surgeon General of the United States from 1936 to 1948 who oversaw both the Tuskegee Syphilis Experiment and infamous Guatemala syphilis experiment,25 published Shadow on the Land: Syphilis, the White Man’s Burden in 1937, which communicated the responsibility whites had to treat black syphilitics, having spread the disease to them in the first place.26 Countering the conventional stance that black populations had significantly higher rates of syphilis due to their immoral nature, Dr. Parran argued that it was poverty, not race and promiscuity, that explained this greater prevalence of the disease; when socioeconomic factors were equal between the two races, so were syphilis rates.27 Instead, by framing the disease as a race problem, physicians transferred the burden of treatment to the subjects themselves. However, the experiment never intended to provide treatment to its subjects, given the influence of then-current racial theories, scientific racism, and Social Darwinism. As pseudoscientific physical, intrinsic, and disease peculiarities contaminated the image of blacks, labeling them a “notoriously syphilis-soaked race,” physicians echoed the white
25
Stobbe, Surgeon General’s, 102-103.
Thomas Parran, Shadow on the Land: Syphilis, the White Man’s Burden (New York City: Reynal & Hitchcock, 1937), 568. 26
27
Ibid.
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community’s harsh attitudes toward blacks in proving these racist theories and setting the stage for inaction in the face of disease and responsibility. Although the racial climate of the early 1930s may have provided a setting that could “tolerate” such a study, a question of what allowed the experiment to continue for 40 years under evolving racial dynamics remained unexplained. In the following section, the perils of scientific self-regulation and the insular nature of the experiment that allowed it to capitalize on race, gender, and class influences, will be explored through the eyes of Nurse Eunice Rivers. Miss Rivers’ Lodge Nurse Eunice Rivers offers the most intriguing and controversial perspective in the Tuskegee Syphilis Experiment as one of the most prominent figures involved in the study, unveiling the interwoven influences of race, gender, and class that contributed to the condoning and perpetuation of ethical misconduct. Recruited at the experiment’s inception, Rivers steadfastly remained involved throughout the 40 years. She was the sole constant figure, aside from the study’s subjects.28 Aside from that differentiating factor, Nurse Rivers was also the only woman, among both the participants and medical personnel, which raises questions about the gendered divisions of public health work at local and national levels. These qualities unique to Nurse Rivers seemed to render her submissive obedience more accessible to those higher up in the medical hierarchy, namely, white physicians, suggesting she was taken advantage of. However, the full arc and artful progression of the study reveal a much more complex truth. It becomes a question of not merely whether Nurse Rivers’ guilt could be condoned by her ignorance or obliged deference but also whether she purposely inflicted harm on the subjects.
28
Howard Brody, “Faces of Tuskegee,” accessed December 14, 2017.
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While Nurse Rivers had sufficient knowledge of the experiment, she was not informed of all details of the study and worked under the physicians, who instructed her to carry out procedures, especially those involving close interaction with the subjects.29 However, more importantly, she viewed the study as a continuation of her previous public health work.30 First employed at the Tuskegee Movable School, an institution strongly influenced by Booker T. Washington’s racial uplift philosophy, as a public health nurse, she worked in the spirit of service to the rural poor, a mentality she carried with her to the Tuskegee Syphilis Experiment.31 While her belief system influenced her active participation in the experiment, there were also more practical matters; before her involvement with the experiment she lost her job at the Movable School during the Great Depression. She was serving as night supervisor at the John Andrew Hospital when she was recommended to be the chief on-site assistant for the Tuskegee Syphilis Experiment, a role that appealed to her more.32 Meanwhile, in the initial stages of the study, contradicting Rivers’ commitment to improving black health, the PHS deceptively tested men and women for “bad blood,” the euphemism used for “syphilis” that subjects confused with common conditions such as rheumatism or bad stomachs that they believed they were being treated for instead.33 The physicians ended up with 399 men with syphilis and a control group of 201 men.34 To procure spinal taps from the subjects, Dr. Raymond H. Vonderlehr, on-site director of the study Susan L. Smith, “Neither Victim nor Villain: Nurse Eunice Rivers, the Tuskegee Syphilis Experiment, and Public Health Work,” Journal of Women’s History 8, no. 1 (Spring 1996): 105. 29
30
Ibid., 106.
31
Ibid., 97.
32
Ibid., 100.
33
Jones, Bad Blood, 5.
34
Uschan, Forty Years, 45.
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beginning in 1932, advertised them as a “LAST CHANCE FOR SPECIAL FREE TREATMENT,” demonstrating a “flair for framing letters to negroes” that Dr. Oliver C. Wenger, director of the PHS Venereal Disease Clinic, complimented in one of his letters to Dr. Vonderlehr.35 Dr. Vonderlehr’s assistant Dr. John R. Heller further duped the men into thinking they were being treated by giving them colored aspirin and vitamins.36 Dr. Sidney Olansky explicitly commented on their ignorance, pointing out how easily they could be manipulated. 37 As the study continued, it depended significantly on the cooperation and deference of Nurse Rivers. In fact, when local doctors and health officials came in contact with an untreated subject of the study, according to Dr. Reginald G. James, a black physician who conducted public health work in Macon County and worked with Nurse Rivers in treating syphilis patients in their mobile treatment bus between 1939 and 1940,38 she would remark, “He’s under study and not to be treated.”39 Further extensive measures were taken, including the exclusion of the men from nationwide venereal disease eradication campaigns. 250 of the men also registered for the World War II draft, which required treatment for syphilis, only to be subsequently exempted upon request of the PHS. Moreover, when, in his letter to Dr. Wenger in 1933, Dr. Vonderlehr suggested prolonging the duration of the study, Dr. Wenger responded to Dr. Vonderlehr’s letter disparagingly: “As I see it, we have no further interest in these patients until they die.”40 The
35
Jones, Bad Blood, 136.
36
Uschan, Forty Years, 43.
37
Ibid., 45.
38
Reverby, Examining Tuskegee, 96.
39
Jones, Bad Blood, 6.
40
Reverby, Examining Tuskegee, 47.
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physicians planned to deny treatment until the last subject’s death and to perform autopsies, as they believed that only an autopsy would reveal the essential nature of harm inflicted upon the subjects’ bodies, substantiating their findings. Dissecting the motives behind and necessity for the autopsies in a letter to Dr. Robert Moton, President of the Tuskegee Institute, Surgeon General Cumming, seeking to continue the partnership with the Institute, wrote, This study which was predominantly clinical in character points to the frequent occurrence of severe complications involving the various vital organs of the body and indicates that syphilis as a disease does a great deal of damage. Since clinical observations are not considered final in the medical world, it is our desire to continue observation on the cases selected for the recent study and if possible to bring a percentage of these cases to autopsy so that pathological confirmation may be made of the disease processes.41 Because of the destructive nature of this thorough postmortem examination, the PHS physicians devised tactful approaches to entice the men through to autopsy. For instance, they incentivized the men to consent to the autopsy by offering a burial insurance of $50, which amounted to a weighty sum to the subjects’ families, who were predominantly sharecroppers.42 Whether Nurse Rivers was aware of the full scheme, or whether she wielded enough influence to override the PHS physicians’ decision to draw out the experiment, she served as an instrument of deceit, not only roping families into agreement concerning the autopsy but also ensuring that subjects remained in the Tuskegee Syphilis Experiment. Since the researchers anticipated resistance from subjects’ families to the autopsies for the aforementioned reason of
41
Brandt, “Racism and Research,” 24.
42
Ibid., 25.
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the disruptive nature of the dissection, Nurse Rivers deliberately obfuscated their intentions to conduct the autopsies while corresponding with the subjects’ families. Playing a crucial role in obtaining consent, she compared the autopsy to an “operation” and often consoled worried family members for hours.43 In placing subjects under her watchful care, gaining their trust and cooperation, and operating under the immoral vision of the PHS physicians, Nurse Rivers aided with the delivery of the subjects to their deaths. “Miss Rivers’ Lodge” terms the affectionate relationship she forged with each of the men but also captures the manipulative ways of their recruitment and retention.44 Taking advantage of the vastly illiterate and poor population of blacks in Macon County, the researchers appealed to the fact that healthcare would have been a luxury to the participants of the study. All subjects received free periodic physical exams at the Tuskegee Institute, treatment for minor ailments not related to syphilis, complimentary hot meals, 45 and were chauffeured to and from the clinic, which became rides of distinction for the subjects who considered themselves elevated above their neighbors who could not afford healthcare.46 While they unwittingly joined the lodge, they were simultaneously manipulated to remain with the experiment, denied of their fundamental right to informed consent and of any means to back out. Indeed, despite bearing a historically well-founded suspicion of government, black tenant farmers still got involved in the study at least in part due to the presence of Nurse Rivers, who
43
Uschan, Forty Years, 55.
44
Jones, Bad Blood, 6.
45
Uschan, Forty Years, 50-51.
Eunice Rivers et al., “Twenty Years of Followup Experience in a Long-Range Medical Study,” Public Health Reports (1896-1970) 68, no. 4 (April 1953): 393. 46
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was involved in a previous syphilis treatment project sponsored by the Rosenwald Fund and whose presence generated interest in local clinics. A contentious personality with a conflicting legacy, did Nurse Rivers betray these men and the Tuskegee community? While some may hold her accountable for her passive submission, Fred Gray points out that as a trained black woman serving as a nurse in the South in the 1930s, she had no authority to challenge the direction of the white male physicians and government officials or modify the experiment in any way.47 Unconditional obedience was in fact a defining characteristic that she believed helped her fulfill her role as a “good” health practitioner, as Nurse Rivers explained, “We were taught that we never diagnosed, we never prescribed; we followed the doctor’s instructions!”48 Otherwise, proclaiming herself to be well-intentioned, Nurse Rivers valued and enjoyed working with the subjects, and she did not consider herself an accomplice to the PHS physicians. Indeed, she defended the men when she witnessed the white physicians mistreating them, “Just talk to them like they’re people,”49 she instructed, recalling in an interview, “Don’t mistreat my patients. You don’t mistreat them … ‘cause they don’t have to come. And if you mistreat I will not let them up here to be mistreated.”50 Harboring an earnest care for the men, Nurse Rivers felt that both her contributions and the study in general benefited them, and she was described by the subjects as dedicated to their health.51 However, her steadfast compliance with authority overshadowed her devotion to service in the name of public good.
47
Fred D. Gray, The Tuskegee Syphilis Study: The Real Story and Beyond (Montgomery: NewSouth, 2002), 85.
48
Jones, Bad Blood, 163.
49
Uschan, Forty Years, 57.
50
Susan M. Reverby, Examining Tuskegee: The Infamous Syphilis Study and Its Legacy (Chapel Hill: University of North Carolina Press, 2013), 178. 51
Brody, “Faces of Tuskegee.”
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It appears as though by the 1950s, the study’s physicians came to recognize Nurse Rivers’ indispensable contributions, unwavering dedication, and the value of her strong personal connections with the subjects. Reflecting her enhanced status as an equal coworker, the photograph displays Nurse Rivers alongside some of the study’s clinicians.52 (See Fig. 1.) Furthermore, she was also first-author of one of the published reports circulated in Public Health Reports, the official journal of the Office of the United States Surgeon General and the PHS, in 1953. Describing her experiences, in the paper, she spoke of the personal aspect of deeply established relations with the subjects inherent to her role as the nurse: One cannot work with a group of people over a long period of time without becoming attached to them. This has been the experience of the nurse. She has had an opportunity to know them personally. She has come to understand some of their problems and how these account for some of their peculiar reactions. The ties are stronger than simply those of patient and nurse. There is a feeling of complete confidence in what the nurse advises … Realizing that they do depend upon her and give her their trust, she has to keep an open mind and must be careful always not to criticize, but to help in the most ethical way to see that they get the best care.53 Interestingly, the viewpoint Nurse Rivers held toward her ethical responsibilities as a nurse spelled out in the passage above heralded her later emphasis in an interview on “good medical”
52
Ibid.
53
Rivers et al., “Twenty Years,” 394.
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care54—care that the men otherwise would not have received, care that she recognized as a form of treatment55—when prompted about the ethics of the experiment.
Figure 1. Photograph of some of the Tuskegee Study Experiment’s physicians. Nurse Eunice Rivers is on the far left. Dr. Reginald D. James, third from the left, was not directly involved in the study. (From “Faces of Tuskegee.” By Howard Brody.) For years following the study’s abrupt halt, as it was launched into the spotlight of public scrutiny, Nurse Rivers defended her actions and role in the study, aware of but unsympathetic to the fevered moral backlash. When the experiment was first exposed to the public, she retreated into silence, refusing to disclose a single word about her role and opinions. Highlighting her race and gendered class attitudes, Nurse Rivers was a black woman working in a traditionally white male-dominated sector. Susan Reverby aptly notes, Her silences and inability to find the words, or the permission to utter them … suggest how powerful the pressures were to downplay the ways racism shaped the role of the black professional and the Tuskegee Institute in the study. The overwhelming racism that
Evelynn M. Hammonds, “Your Silence Will Not Protect You: Nurse Rivers and the Tuskegee Syphilis Study,” in Tuskegee’s Truths: Rethinking the Tuskegee Syphilis Study, ed. Susan M. Reverby (Chapel Hill: University of North Carolina Press, 2000), 345, previously published in The Black Women’s Health Book: Speaking for Ourselves, ed. Evelyn C. White (Seattle: Seal Press, 1994), 323-31. 54
Susan M. Reverby, “Rethinking the Tuskegee Syphilis Study: Nurse Rivers, Silence and the Meaning of Treatment,” in Tuskegee’s Truths: Rethinking the Tuskegee Syphilis Study, ed. Susan M. Reverby (Chapel Hill: University of North Carolina Press, 2000), 372, previously published in Nursing History Review 7 (1999): 3-28. 55
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motivated and perpetuated the study almost made it impossible to speak of the complexity of class and gender within the black community.56 In 1974, Nurse Rivers would testify to her friends Helen Dibble and Daniel Williams, with the Nightingale Pledge hung on her living room wall.57 While she embraced the subjects as family, she also held, “If syphilis was not active the treatment was worse than the disease,” intensifying the moral qualms that arose with the discovery of penicillin as an effective cure for syphilis.58 However, at that point, her perspective of the experiment was shaped and cemented by its rationale and earlier philanthropic foundations in the mass syphilis treatment program, so disengaging herself from her nursing position was not a consideration. On the opposite spectrum of the controversy, Nurse Rivers has also been described as the “Harriet Tubman” of nursing. Multiple pieces of evidence suggest that she actually helped subjects escape the inevitable death programmed into the Tuskegee Syphilis Experiment.59 It was hinted at in a letter that she surreptitiously administered penicillin to subjects, with a PHS physician referring to her “conflicting loyalty to the project.”60 Contradicting other sources that implicated her in deliberately preventing subjects from receiving medication from doctors outside of the study, in her interview with James Jones, she stated matter-of-factly, “I don’t know that we did,” when probed about her methods for keeping the subjects from getting treated.61 She
Darlene Clark Hine, “Reflections on Nurse Rivers,” in Tuskegee’s Truths: Rethinking the Tuskegee Syphilis Study, ed. Susan M. Reverby (Chapel Hill: University of North Carolina Press, 2000), 394, excerpt from Black Women in White: Racial Conflict and Cooperation in the Nursing Profession, 1890-1950 (Bloomington: Indiana University Press, 1989). 56
57
Reverby, “Rethinking the Tuskegee,” in Tuskegee’s Truths, 371.
58
Ibid.
59
Ibid., 376-77.
60
Ibid., 377.
61
Ibid., 378.
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may have established a “Miss Rivers’ Lodge,” but simultaneously, there may have been a “Miss Rivers’ List” for those whom she rescued from the study and aided in obtaining treatment. 62 Nonetheless, regardless of any potential clandestine efforts that Nurse Rivers may have directed underground, her support of the PHS physicians in preventing the men from receiving treatment underscores the extent to which her involvement in the experiment eclipsed her moral judgment. She believed the doctors when they explained the necessity of the study of the late stages of syphilis in blacks, with its comparative value in relation to the research that had been conducted in Oslo decades earlier.63 Yet the open breaches of legal codes and ethical canons of experimentation could not have been unknown to Nurse Rivers and the physicians. Alabama’s public health legislation had always mandated treatment of patients with venereal disease and the reporting of each case, so it was legally indefensible for the study to begin in the first place in 1932.64 In 1943, brought about by the wartime frenzy, the Henderson Act superseded and reinforced these laws by adopting a mass syphilis and tuberculosis screening program for all Alabama residents aged 14 to 50 and required the treatment of all those found to have the diseases.65 However, just as the men in the study were removed from previous treatment programs, state and local health officials continued to aid the PHS by excluding the men from the Henderson Act’s largest statewide testing and treatment program in the country. Furthermore, the Tuskegee Syphilis Experiment continued to operate into the late 60s and 70s in direct opposition to the World Health Organization’s
62
Ibid.
63
Hammonds, “Your Silence,” in Tuskegee’s Truths, 344.
64
Jones, Bad Blood, 178.
65
Ibid.
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Declaration of Helsinki of 1964, which required “informed consent” for research involving human experimentation.66 Considering these violations of legal and moral statutes, the idea that the Tuskegee Syphilis Experiment could persist for 40 years without opposition is difficult to entertain. Indeed, there were dissenting voices and defending agents that constituted a tug of war between conflicting interests and ethical values at various points in the study. The following section will examine the suppression that muted these critical voices, revealing the mechanisms that allowed the study to slip under that radar of the medical community at large and continue under the singular vision of the PHS. “It Will Either Cover Us with Mud or Glory”: Dissenters and Defenders The PHS physicians were met with various forms of resistance throughout the course of the Tuskegee Syphilis Experiment, such as the aforementioned institution of stringent regulations for venereal disease treatment and human experimentation, advent of penicillin as an effective cure for syphilis, evolving racial dynamics with the civil rights movement (1954-1968), and individuals who challenged the study themselves. However, their responses to what otherwise could have thwarted their efforts and halted the experiment earlier on only served to further bolster the study’s racist premises and fuel its progression, revealing the power of racial speculations and scientific self-regulation. While Nurse Rivers was the sole constant figure in the study for all 40 years, a number of other black health professionals also collaborated with the PHS physicians.67 If it could be
66
Ibid., 189.
James H. Jones, “The Tuskegee Syphilis Experiment,” in The Oxford Textbook of Clinical Research Ethics, ed. Ezekiel J. Emanuel, et al. (Oxford: Oxford University Press, 2008), 93, accessed March 29, 2018. 67
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argued that Nurse Rivers was unfairly used and, like the patients, victimized to carry through with the racist visions of the white government officials, what could be said of the other black professionals who were also involved in the experiment? Why did black health professionals, including Rivers, not challenge the study? Black public health leader Dr. Paul B. Cornely stated in 1989, “I was there and I didn’t say a word. I saw it as an academician. It shows you how we looked at human beings, especially blacks who were expendable.”68 As an instance of racial subordination, it is important to note that the name of the study derived from the Tuskegee Institute, the historically black university established by Booker T. Washington, whose affiliated hospital, the John A. Andrew Memorial Hospital, allowed the PHS to use its facilities, rather than the PHS physicians who initiated the study themselves.69 Not only laying a disproportionate emphasis on the black participants, such a misnaming wrongly ascribes moral responsibility to the Tuskegee Institute until the present day. Black physicians and institutions were perhaps misled by the recognition of the highly regarded PHS and the promise of improved attention to black health, an oft-neglected area of healthcare at the time, that the Tuskegee Syphilis Experiment would have been thought to bring. Dr. Eugene Dibble’s remarks about the experiment allude to the notion that the study would improve the institute’s reputation, as he commended “the educational advantages offered our interns and nurses as well as the added standing it will give the hospital.”70
68
Smith, “Neither Victim,” 355.
John C. Fletcher, “A Case Study in Historical Relativism: The Tuskegee (Public Health Service) Syphilis Study,” in Tuskegee’s Truths: Rethinking the Tuskegee Syphilis Study, ed. Susan M. Reverby (Chapel Hill: University of North Carolina Press, 2000), 276. 69
70
Jones, Bad Blood, 142.
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Indeed, the biracial backings of the study played a prominent role in the continuation of the experiment. The roles that the black doctors, health officials, and educators played, while they did not hold executive positions, were crucial, underscoring the influence of the racial theories that drove the experiment forward, rather than diminishing their validity.71 Nonetheless, the extent to which blacks were involved in executing the study remains ambiguous. Dr. Eugene Dibble, head of the John A. Andrew Memorial Hospital at the Tuskegee Institute, in a letter to Dr. Robert Moton, president of the Tuskegee Institute who succeeded Booker T. Washington, expressed support for the potential of a collaborative study with the PHS, as it would “offer very valuable training for [their] students as well as for the Interns … our own hospital and the Tuskegee Institute would get credit for this piece of research work.”72 Both Dr. Dibble and Dr. Moton were aware of the true intent of the study, and Dr. Dibble aided with several elements of the experiment, such as the spinal taps.73 He was also the one to recommend Eunice Rivers to the project.74 On the contrary, there were certainly some other blacks who, in cooperating with the PHS in this undertaking, fell victim to its deceptive nature as had the subjects affected with syphilis. Intern Dr. Joshua Williams, who helped Dr. Vonderlehr in drawing blood samples of the patients in 1932, related to the Department of Health, Education and Welfare (HEW)’s Tuskegee Syphilis Study Ad Hoc Advisory Panel in 1973, “I know we thought it was merely a service group organized to help the people in the area. We didn’t know it was a research project at all at the
71
Brandt, “Racism and Research,” 25.
72
Jones, Bad Blood, 101-102.
73
Brody, “Faces of Tuskegee.”
74
Ibid.
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time.”75 In fact, Dr. Williams thought he administered patients medications to treat syphilis; however, they may have been placebos.76 For others, it is unclear whether they were unknowingly or knowingly complicit in the study. When Dr. William B. Perry of the Harvard School of Public Health spearheaded the resumption of Rosenwald Fund-endorsed syphilis treatment programs in Macon County, Dr. Vonderlehr, threatened by the thought of the experiment being discontinued, partnered Nurse Rivers with Dr. Perry, securing his cooperation with the experiment.77 Also assisting with the study was Dr. Jerome J. Peters, who conducted many of the autopsies at the Veterans Hospital in Tuskegee.78 Because black health officials were present alongside their white counterparts for the duration of the study, their assistance and involvement could have been seen by the subjects as reassuring signs that they were receiving the treatment they needed.79 Although the PHS officials likely could not have followed through with their vision of the study without deep-rooted biracial support, interestingly, the group of black health professionals as a whole were often dismissed by later critics who interpreted the study as a “simple morality play that cast white people in the familiar role of exploiters and oppressors of black people.”80 Akin to the argument that Nurse Rivers had no authority to challenge the white government doctors and was manipulated into complicity, lacking a complete understanding of the study’s racist nature, the Tuskegee Institute
75
Brandt, “Racism and Research,” 25.
76
Jones, Bad Blood, 5.
77
Ibid., 162.
78
Ibid., 135.
79
Jones, “The Tuskegee,” 93.
80
Ibid.
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depended upon the monetary support of whites.81 As a result, the prominent black institution could not risk the chance of jeopardizing its relations with the United States government and the PHS in 1932 by objecting to its proposed study.82 However, by the 1950s, with the civil rights movement gaining momentum and the evolving racial atmosphere that cultivated increasing intolerance of racism, for the first time, the study was met with resistance originating outside of the PHS’s Venereal Disease Division. 83 The insulating bubble of the medical community that had for the most part safeguarded knowledge of the experiment from the public sphere was soon to burst. Before sequentially investigating the string of external opposition that would eventually terminate the study but that the researchers faced, refuted, and haphazardly suppressed, it is worthwhile to examine the internal antagonism that arose starting in the 1930s. In need of a skilled syphilologist to interpret the course of the disease’s progression in the men’s bodies, in 1937, Dr. Vonderlehr dispatched PHS’s Austin V. Deibert to Tuskegee.84 Scrutinizing the most recently published article and medical records of the men for lack of an established protocol for the experiment, Deibert caught a startling discrepancy between Vonderlehr’s assertion that the subjects “never received treatment” and the fact that, in reality, 40 percent of the syphilitic group had received treatment, though inadequate amounts, between 1932 and 1934.85 Such treatment would have significantly lowered rates of cardiovascular syphilis and increased occurrence of neurosyphilis, which would actually align
81
Reverby, Examining Tuskegee, 155.
82
Ibid, 18-19.
83
Ibid., 70.
84
Ibid., 58.
85
Ibid., 58.
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with their later finding of relatively high rates of neurosyphilis among the men, a statistic that the researchers would manipulate to appear lower.86 Two decades later, questions concerning the racist motives of the Tuskegee Syphilis Experiment and its fundamental scientific flaws would arise. Now, they came from observers outside of the Venereal Disease Division, as word of the study traveled. However, despite losing track of more of the subjects, as they moved away from Macon County, Dr. Olansky only saw it as an impetus to continue the study, referencing an unconditional obligation: “We have an investment of almost 20 years of Division interest, funds and personnel; a responsibility to the survivors both for their care and really to prove that their willingness to serve, even at risk of shortening life, as experimental subjects. And finally a responsibility to add what further we can to the natural history of syphilis.”87 Dr. Wenger’s remarks further justifying the study resonate with those of Dr. Olansky: “We know now, where we could only surmise before, that we have contributed to their ailments and shortened their lives. I think the least we can say is that we have a high moral obligation to those that have died to make this the best study possible.”88 The first oppositional voice was that of physician Dr. Count D. Gibson, associate professor at the Medical College of Virginia, who, in 1955, after hearing Dr. Olansky talk about his work on the study, expressed his utter shock about the ethics of the experiment in a letter to Dr. Olansky.89 Dr. Olansky, in his response, only inadvertently exposed the fallacies and inconsistencies that riddled the experiment, lying outright that the subjects “knew that they had
86
Ibid.
87
Ibid., 69.
88
Uschan, Forty Years, 75.
89
Reverby, Examining Tuskegee, 70.
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syphilis & what the study was about … They got far better medical care as a result of their being in the study than any of their neighbors.”90 On the topic of treatment, he elaborated that only those with latent syphilis were under study and left untreated. However, his article published the same year reported that “70 per cent of the syphilitic group [had] remained untreated,” and another one published the subsequent year stated that out of 159 men, “23 showed evidence of late syphilis … and that no one patient with late syphilis had received an adequate course of therapy.”91 Left unanswered is the question of how much therapy the subjects received, as well as how much therapy syphilitics who were not in the latent stage and therefore not selected for the experiment received. When asked why he did not follow up with Dr. Olansky’s response, Dr. Gibson was told at Medical College of Virginia that “if he wanted to get along, succeed and thrive in his medical career he’d better shut up about this and stop raising questions. He was going up against very senior and powerful men.”92 In a sense, even if unintentionally, the PHS appeared as an oppressive force to collaborators and outsiders because of its reputation as a highly regarded governmental agency. In the 1960s, the scientific validity of the experiment was further debated. A group of PHS physicians and statisticians met at the Centers for Disease Control and Prevention (CDC) in April 1965 to discuss the experiment’s future directions.93 Although the PHS physicians acknowledged that a growing number of subjects procured penicillin on their own, they agreed that the treatment was negligible and would not compromise the aims of the experiment.94 In
90
Ibid., 71.
91
Ibid.
92
Ibid., 72.
93
Ibid., 74.
94
Ibid.
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addition, it was clear through the periodic rounds of blood tests that some subjects who originally belonged to the control group contracted syphilis and that somewhere along the way, the physicians chose to replace some of the syphilitic subjects who received treatment from outside the study.95 Yet the lack of proper and accurate record keeping since the experiment’s inception meant that all the publications used the original figures of 399 subjects with syphilis and a control group size of 201.96 Recognizing that discrepancies in syphilis diagnosis results could be attributed to the use of older serology methods and lack of standardized protocols, one of the study’s statisticians Eleanor Price commented, “Those with aneurysms died primarily during the first ten years and the trouble with the study is that there was no starting point. Makes it hard to analyze this.”97 Chief of medical research at the Venereal Disease Research Laboratory Anne R. Yobs was more blunt: “If you can’t evaluate it somehow, you better call it quits right now because it is not getting clearer as time goes on.”98 Dr. Olansky refused to discontinue the study, heartlessly asserting that the men should be tracked “till dead do us part,” with the “important thing being what actually kills them.”99 Just a month prior to the 1965 meeting and within a 100-mile radius of Tuskegee, Rosa Parks, Martin Luther King, Jr., and members of the Southern Christian Leadership Conference (SCLC) led the historic Selma to Montgomery March, marking the climax of the civil rights movement. Yet the meeting notes, indicating that the radically changing racial atmosphere had
95
Uschan, Forty Years, 64.
96
Ibid., 67.
97
Reverby, Examining Tuskegee, 74.
98
Ibid.
99
Ibid.
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come up as a topic of discussion, state, “Racial issue was mentioned briefly. Will not affect the study. Any questions can be handled by saying these people were at the point that therapy would no longer help them. They are getting better medical care than they would under any other circumstance,” which is exactly the justification that Dr. Olansky had given in his written response to Dr. Gibson in 1955.100 When Detroit-native cardiologist Irwin J. Schatz came across another article on the Tuskegee Syphilis Experiment published in 1964 through the more widely disseminated Archives of Internal Medicine, like Dr. Gibson, he was in utter disbelief at the findings of the study that allowing syphilis to naturally progress in blacks caused mortality and cardiovascular damage.101 Writing to the senior author of the article, PHS physician Donald H. Rockwell, who passed the letter on to Anne R. Yobs, Schatz never received a response. With the heat and volatility of the civil rights movement, it was not that the evolving racial dynamics did not affect the PHS. Rather, instead of unabashedly reporting their findings as they had in the earlier stages of the experiment, they had grown self-conscious by the 1960s of the potential backlash they could face were the study to come under the scrutiny of the public eye.102 Influenced by the Nuremberg Code of 1947 and the Declaration of Helsinki of 1964 that arose from the Doctors Trial, the United States government felt the need to impose stricter regulations on research involving human experimentation.103 In 1966, the PHS released Policy
100
Brandt, “Racism and Research,” 26.
101
Reverby, Examining Tuskegee, 75.
102
Jones, “The Tuskegee,” 93.
103
Ibid., 93-94.
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and Procedure Order Number 129, which required all clinical research grant proposals to pass a round of peer review conducted by a panel of the investigator’s peers at his or her respective institution, following which an “assurance of compliance” would be filed to the PHS.104 Of course, while these newly issued provisions must have been followed by prospective PHS grant recipients, they did not apply to the PHS’s programs.105 Despite these contrarian forces attempting to counteract the aims of the Tuskegee Syphilis Experiment researchers, the study forged on for 40 years without weakening in momentum. In fact, as seen through the responses of the PHS officials who oversaw the study, the criticism they faced that was supposed to tear the study down only served as fuel to further buttress their motives. Nevertheless, remarks made by Dr. Taliaferro Clark and Dr. Oliver Wenger before the study even began prophesy the fate of the study in 1972. Dr. Clark wrote, “I am confident the results of this study, if anywhere near our expectation, will attract worldwide attention.”106 Dr. Wenger followed, “It will either cover us with mud or glory when completed.”107 “Science Without Conscience”: 40 Years of the Tuskegee Syphilis Experiment While the PHS physicians did not make any concerted efforts to conceal the study, as they openly published their findings in 13 medical reports from 1932 to 1972, they did mute the deeply controversial ethical aspects of the study by detaching subjects from their humanity. 108
104
Jones, Bad Blood, 189.
105
Ibid., 190.
106
Uschan, Forty Years, 61.
107
Ibid.
108
Reverby, Examining Tuskegee, 70.
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Through the physicians’ emphasis on expanding scientific knowledge and adoption of a clear tone of scientific objectivity, the reports became a vehicle to inspire moral apathy in the medical community and to infuse the PHS’s findings with a sense of inherent value. Not only did the researchers mislead readers into thinking of the subjects as volunteers, qualifying them as “people [who] responded willingly,” but they also “[depicted] the disease as dynamic agent whose impairment of the central nervous system takes place in the ‘scene’ of the patient.”109 Syphilis was the active agent that destroyed an objectified body, a “human host” that was distanced from readers.110 Clearly, the physicians selected their words with care, as when they explained the study to blacks, they referred to it as a study of the effects of syphilis on the “human economy,” but when speaking to whites, they used the term “Negro male.”111 The appearance of “untreated syphilis in the Male Negro” in titles of the reports was thus appropriately tailored to the mostly white readers of the journals. Furthermore, by using phrases such as “‘follow’ and ‘survey the patients,’” the PHS positioned itself as observer rather than perpetrator, reflecting the physicians’ beliefs that they never interfered with the men’s ability to procure treatment and deflecting responsibility from them and onto the subjects themselves. 112 PHS researcher John R. Heller proclaimed that the subjects “were not particularly curious about their disease,” implying a passivity to his role as a physician.113
109
Ibid.
110
Ibid.
111
Jones, Bad Blood, 138.
112
Reverby, Examining Tuskegee, 70.
113
Ibid., 97.
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In a way, the Tuskegee Syphilis Experiment’s emphasis on its potential for purposeful scientific contribution demonstrates the physicians’ views that the end justifies the means.114 By ascribing some absolute value to the study, claiming that it would shed new light on the natural history of syphilis in blacks, the PHS doctors suggested that the men were expendable in the name of greater good. Their methods were reframed as the observation of the progression of syphilis “uninfluenced by modern treatment” rather than an active infliction of harm through the denial of treatment.115 In addition to the guard of the esteemed nature of scientific research and of the pursuit of the unknown, the duration of the study itself boosted the credibility of the research and its potential for further prolongment, as “one of the longest continued medical surveys ever conducted.”116 Finally, the 40-year continuation of what was meant to be a six-month or yearlong study also speaks to the perils of scientific self-regulation and bureaucracy. Because of the lack of checks and balances on the PHS that would have called for a regular reevaluation of the study’s validity and ethicality, were it not for the study’s rather accidental journey to the popular press, it likely would not have been stopped until each subject’s body had been autopsied.117 When whistleblower Peter Buxton wrote to William J. Brown, chief of the CDC Venereal Disease Division, specifically calling the ethics of the study into question, Brown cited a feeling of “moral obligation to continue the study.”118 Similarly speaking to a connection between medical Martha Solomon Watson, “The Rhetoric of Dehumanization: An Analysis of Medical Reports of the Tuskegee Syphilis Project,” in Tuskegee’s Truths: Rethinking the Tuskegee Syphilis Study, ed. Susan M. Reverby (Chapel Hill: University of North Carolina Press, 2000), 257-58, previously published in Western Journal of Speech Communication 49 (1985): 233-47. 114
115
Ibid., 261.
116
Rivers et al., “Twenty Years,” 391.
117
Brandt, “Racism and Research,” 27.
118
Reverby, Examining Tuskegee, 79.
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research, race, and power, Tuskegee Institute physician Joshua W. Williams conveyed his sense of powerlessness at the time of the study. Racial incentives and even the longevity of the study itself gave validity to the research and the hypothesized findings, overshadowing moral conscience. In 1965, when PHS venereal disease investigator Peter Buxton overheard another PHS health official discuss the Tuskegee Syphilis Experiment with a colleague, mentioning a subject from the study who received treatment but was not supposed to, he, like Schatz, was horrified. However, Buxton found himself in a similar situation as Schatz had been in when he first learned of the study; he was met with general indifference, as the people he talked to did not see any ethical problems with the study.119 However, Buxton refused to silence his qualms. Finally, when young Associated Press (AP) reporter Edith Lederer heard of the study over dinner with Buxton one day, she knew the story had to be let out.120 It was assigned to reporter Jean Heller, who published the article, titled, “Syphilis Victims in U.S. Study Went Untreated for 40 Years,” on July 26, 1972. The story caught the nation’s attention.121 Shortly thereafter, the HEW decided to muster together an ad hoc advisory panel of nine men and women, five of whom were black and four of whom were white, to “[d]etermine whether the study was justified in 1932 and whether it should have been continued when penicillin became generally available, recommend whether the study should be continued … and determined whether existing policies to protect the rights of patients” in HEW research were
119
Ibid., 78.
120
Ibid., 84.
Jean Heller, “Syphilis Victims in U.S. Study Went Untreated for 40 Years,” The New York Times, July 26, 1972, accessed December 14, 2017. 121
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“adequate and effective.”122 Although the panelists determined to halt the study at once, they did so with the wrong rationalization, characterizing the study as a well-intentioned anomaly, a statistical accident that was supposed to make a valuable scientific contribution. While the HEW Final Report condemned the subjects’ lack of informed consent and held that penicillin should have been given, it neglected the fact that the men were duped into the study and participated under the guise of treatment. Placing a disproportionate emphasis on patient autonomy, or a lack thereof, the panel members were concerned about any implications the report could put forth against scientific progress, fearful that the report would come to be criticized as a threat to human experimentation.123 The HEW Final Report ultimately failed to place the study in its racial contexts. Two decades after the report was published, panel member Jay Katz commented, “It is almost unbelievable that we said nothing about the racial implications of the study,” reflecting the misguided notions that the medical community perpetuated through its research at the intersection of race and medicine.124 While the phrase “legacy of the Tuskegee Syphilis Experiment” is sometimes used to refer to the widely held yet disputed belief that blacks are now less willing than whites to take part in research studies because of the PHS’s study, the Tuskegee Syphilis Experiment’s legacy really serves as a clarion reminder and warning of the dangers of ethical oversight in science. From its inception, deriving from a seemingly scientifically grounded conjecture of the proposed dimorphic progression of syphilis that established the study’s scientific value and validity, to its conclusion, persisting by way of deception, exploitation of racial hierarchies, and medical
122
Reverby, Examining Tuskegee, 92.
123
Brandt, “Racism and Research,” 27.
124
Ibid., 99.
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paternalism, the Tuskegee Syphilis Experiment revealed much more about relationship between race, medicine, and scientific bureaucracy than it did about that between race and syphilis.
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Bibliography Brandt, Allan M. “Racism and Research: The Case of the Tuskegee Syphilis Study.” The Hastings Center Report 8, no. 6 (December 1978): 21-29. http://www.jstor.org/stable/3561468. This article provides an overarching picture of the infamous medical experiment, giving an overview of racialized medicine in the early twentieth century as it relates to syphilis, covering the inception of the study, and revealing the immoral process of selecting the subjects. Brandt, the Amalie Moses Kass Professor of the History of Medicine and Professor of the History of Science at Harvard University, further emphasizes the importance of placing the study in its time period and sociological context, which he argues the HEW Final Report of the Tuskegee Syphilis Experiment failed to accomplish. Brody, Howard. “Faces of Tuskegee.” Accessed December 14, 2017. https://msu.edu/course/hm/546/tuskegee.htm. Brody, a professor in the Departments of Family Practice, Medical Humanities, and Philosophy at Michigan State University and former director of the Center for Ethics and Humanities in the Life Sciences, presents important figures and key artifacts from the Tuskegee Syphilis Experiment. By assembling the complex lineage of the study, Brody delineates the roles of each individual as well as the influence and outcomes of their actions. Crenner, Christopher. “The Tuskegee Syphilis Study and the Scientific Concept of Racial Nervous Resistance.” Journal of the History of Medicine and Allied Sciences 67, no. 2 (April 2012): 244-80. https://muse.jhu.edu/article/471599. While historians have pointed to scientific racism in discussing the influences that gave rise to the Tuskegee Syphilis Experiment, this article suggests a specific theory of racially determined resistance to syphilis in the nervous system. Christopher Crenner, the Robert Hudson and Ralph Major Professor of the History and Philosophy of Medicine and chair of the Department of History and Philosophy of Medicine at the University of Kansas Medical Center, investigates this concept from its appearance in scientific literature in the early twentieth century to its impact on the experiment. Suggesting that blacks have more primitive nervous systems, the researchers aimed to prove that blacks were less prone to neurosyphilis to demonstrate their innate inferiority. Fletcher, John C. “A Case Study in Historical Relativism: The Tuskegee (Public Health Service) Syphilis Study.” In Tuskegee’s Truths: Rethinking the Tuskegee Syphilis Study, edited by Susan M. Reverby, 276-98. Chapel Hill: University of North Carolina Press, 2000. This paper discusses historical relativism and approaches questions concerning the application of present moral values to judge past events, using the Tuskegee Syphilis Experiment as a case study. John Fletcher, Emeritus Cornfield Professor of Religious Studies and former director of the Center for Biomedical Ethics at the University of Virginia, applying a framework to tackle the process of making transhistorical claims, argues that the Tuskegee Syphilis Study Ad Hoc Advisory Panel’s ruling that the subjects had been denied informed consent is invalid because such a concept was not a norm at the time.
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Gray, Fred D. The Tuskegee Syphilis Study: The Real Story and Beyond. Montgomery: NewSouth, 2002. https://puffin.harker.org:2806/lib/harkerebooks/detail.action?docID=3017587. Following the reveal of the Tuskegee Syphilis Experiment to the press in 1972 and the ensuing public outrage, the government settled a lawsuit in 1975 but did not admit guilt. In 1997, President Bill Clinton delivered an official apology to the victims of the study. Fred Gray, attorney, preacher, and activist who was at the head of several important cases during the civil rights movement in Alabama, defended those impacted by the study and filed a suit that culminated in a $9 million legal settlement in 1975. Gray recounts the study, the lawsuit and events before the Presidential apology, as well as initiatives that are underway to bring positive change out of this deeply unjust and immoral event. In 1997, the Tuskegee Human and Civil Rights Multicultural Center was also established, for which Gray has served as president since 2007. Hammonds, Evelynn M. “Your Silence Will Not Protect You: Nurse Rivers and the Tuskegee Syphilis Study.” In Tuskegee’s Truths: Rethinking the Tuskegee Syphilis Study, edited by Susan M. Reverby, 340-47. Chapel Hill: University of North Carolina Press, 2000. Previously published in The Black Women’s Health Book: Speaking for Ourselves. Edited by Evelyn C. White. Seattle: Seal Press, 1994. 323-31. Hammonds explores the perspective of Nurse Eunice Rivers and the unique position that she embodies at the intersection of race and gender, as the only African American female actively involved in the Tuskegee Syphilis Experiment. Hammonds, the Barbara Gutmann Rosenkrantz Professor of History of Science and Professor of African and African American Studies at Harvard University, draws upon Nurse Rivers’ retreat into silence following the public disclosure of the study as inspiration to examine Rivers’ perception of her own role in the study. Hammonds questions whether Rivers was aware of the consequences that her actions held and how she saw herself and her moral intentions with regard to the physicians. Hazen, Henry H. “Syphilis in the American Negro.” Journal of the American Medical Association 63, no. 6 (August 8, 1914): 463-66. Accessed January 17, 2018. https://jamanetwork.com/journals/jama/article-abstract/435758?redirect=true. Dr. Henry Hazen notes the lack of comprehensive information on the nature of syphilis in blacks, citing prejudice, scarce data, and claims based on opinion rather than evidence. A physician who ran a syphilis clinic at the Freedman’s Bureau Hospital in Washington, D.C. and taught at Georgetown University, Hazen seeks to bridge this gap in this article, collecting statistics on the black population and ascribing certain traits to it in an attempt to make inferences about syphilis in blacks. For instance, Hazen suggests the birth rate of blacks to be reflective of their sexually promiscuous nature. Heller, Jean. “Syphilis Victims in U.S. Study Went Untreated for 40 Years.” The New York Times, July 26, 1972. Accessed December 14, 2017. http://www.nytimes.com/1972/07/26/archives/syphilis-victims-in-us-study-wentuntreated-for-40-years-syphilis.html.
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Writer and journalist Jean Heller reported on the Tuskegee Syphilis Experiment in 1972, 40 years after its inception, placing it under the national spotlight and inciting a frenzied debate over the study’s moral transgressions. Heller provides an overview of the experiment and expounds on the ethical issues raised by the study, namely, the denial of penicillin when it became the standard treatment for syphilis in the late 1940s. Hine, Darlene Clark. “Reflections on Nurse Rivers.” In Tuskegee’s Truths: Rethinking the Tuskegee Syphilis Study, edited by Susan M. Reverby, 386-95. Chapel Hill: University of North Carolina Press, 2000. Excerpt from Black Women in White: Racial Conflict and Cooperation in the Nursing Profession, 1890-1950. Bloomington: Indiana University Press, 1989. In Black Women in White: Racial Conflict and Cooperation in the Nursing Profession, 1890-1950, Darlene Clark Hine, Emeritus Professor of African American Studies and Professor of History at Northwestern University, studies the impact racism had on the nursing profession in the United States. The excerpted passages on Nurse Eunice Rivers provide valuable insight into how Rivers potentially viewed her long-term involvement with the experiment. Hine draws connections between Rivers’ cooperation with the physicians and her upbringing and identity as a black nurse in a male-dominated field. Jones, James H. Bad Blood: The Tuskegee Syphilis Experiment. New and Expanded ed. New York: Free Press, 1993. In this seminal book, named after the catch-all term for a range of illnesses that was used by the Tuskegee researchers as a euphemism for syphilis, James Jones questions how such an atrocious event in the history of medical ethics unfolded and finds answers in studying race relations and the deeply entrenched scientific bureaucracy that governed how the experiment was conducted. Placing the Tuskegee Syphilis Experiment into its historical context, in this edition, Jones additionally strives to shed light on its presentday conceptions, discussing the study’s legacy of mistrust among the black community that has hindered AIDS treatment. Jones is the Distinguished Alumni Professor of History, Emeritus, at the University of Arkansas and was Distinguished Professor of History at the University of Houston during the 1980s and 1990s. ———. “The Tuskegee Syphilis Experiment.” In The Oxford Textbook of Clinical Research Ethics, edited by Ezekiel J. Emanuel, Christine Grady, Robert A. Crouch, Reidar K. Lie, Franklin G. Miller, and David Wendler, 86-96. Oxford: Oxford University Press, 2008. Accessed March 29, 2018. https://books.google.com/books?id=vKFYAtcLAxgC. Jones lays out the crucial facts of the Tuskegee Syphilis Experiment, from providing information on syphilis and the social backdrop of the study to covering its conception and fallout. One particularly striking observation was that a retinue of black health professionals collaborated with the PHS physicians, whose involvement and presence potentially contributed to its prolongment in offering an element of reassurance to the subjects. Morton, Samuel George. Crania Americana; Or, a Comparative View of the Skulls of Various Aboriginal Nations of North and South America. To Which Is Prefixed an Essay on the
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Varieties of the Human Species. London: Forgotten Books, 2012. First published 1839 by Simpkin, Marshall & Co. American physician and anthropologist Samuel Morton founded the domain of craniometry. In this book, which was an instrumental contribution to the field of scientific racism in the nineteenth century, Morton publishes his measurements and analyses of the skulls he collected from around the world. Brain size had been widely believed to be indicative of intellectual capacity, and Morton’s work empirically substantiated this popular conception, as he pinpointed differences between skulls of different races. He claims that Caucasians had the biggest cranial volume and that blacks had the smallest, with Native Americans falling in between, using this finding to conclude that these groups were separate species, to support the theory of polygenism, and to argue that brain sizes reflect the racial hierarchy with whites at the top and blacks at the bottom. Parran, Thomas. Shadow on the Land: Syphilis, the White Man’s Burden. New York City: Reynal & Hitchcock, 1937. http://link.galegroup.com.puffin.harker.org/apps/doc/CX3490200774/GVRL?u=harker&s id=GVRL?xid=46def7a7. Thomas Parran, in his passionate fight against syphilis, urges for the implementation of a systematic, medical approach to eradicating syphilis. He denounces the moral stigma associated with the disease, seeing it to be a hindering force working against his goal of early and immediate treatment of syphilis. In 1932, Thomas Parran was the director of the PHS’s Division of Venereal Disease. He also served as the United States surgeon general under President Franklin Roosevelt from 1936 to 1948. Notably, Parran makes an unconventional argument that whites carry the burden of treating blacks, as they introduced syphilis to them, and that the high rates of syphilis among blacks were not due to their nature but to socioeconomic factors such as poverty. Quillian, Daniel David. “Racial Peculiarities: A Cause of the Prevalence of Syphilis in Negroes.” American Journal of Dermatology and Genito-Urinary Diseases 10 (July 1906): 277-79. Georgia physician Daniel Quillian attributes the high rates of syphilis in the black population to their sexual promiscuity, which he explains comes from the fact that they originated from tropical and semitropical regions and inherently lack morals. Quillian furthermore suggests that 60 to 70 percent of blacks in the South were infected with syphilis, a rate that was significantly higher than other estimates given at the time. Justifying this statistic by claiming that blacks possessed a natural immunity to syphilis, Quillian hypothesizes that this resistance to the disease could come from the laboring conditions to which blacks are subject or could be explained by genetic factors. Reverby, Susan M. Examining Tuskegee: The Infamous Syphilis Study and Its Legacy. Chapel Hill: University of North Carolina Press, 2013. Susan Reverby, Marion Butler McLean Professor Emerita in the History of Ideas and Professor Emerita of Women’s and Gender Studies at Wellesley College, is an expert on the Tuskegee Syphilis Experiment, having published numerous works on the topic. She was a member of the Legacy Committee that led to President Clinton’s federal apology in 1997. In this book, she focuses on detailing the subjects’ experiences participating in the
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experiment, from describing how some of the men still ended up reaching treatment to differentiating racism from biological theories that supported racist theories, and she carries this story to the present day, connecting it to broader morality tale it communicates in the realm of bioethics and scientific research. ———. “Rethinking the Tuskegee Syphilis Study: Nurse Rivers, Silence and the Meaning of Treatment.” In Tuskegee’s Truths: Rethinking the Tuskegee Syphilis Study, edited by Susan M. Reverby, 365-85. Chapel Hill: University of North Carolina Press, 2000. Previously published in Nursing History Review 7 (1999): 3-28. Reverby presents the complex figure of Nurse Eunice Rivers, who acted as a mediator between the subjects and the physicians. Reverby taps into Rivers’ silence following the propulsion of the experiment under the national spotlight as a signal into her dual role, as someone who both sought to care for her patients and was leading them to their deaths. Reverby particularly notes how Nurse Rivers viewed her caregiving as a form of treatment and may have acted against the will of the physicians in directing some of the subjects to treatment. ———. Tuskegee’s Truths: Rethinking the Tuskegee Syphilis Study. Chapel Hill: University of North Carolina Press, 2000. Reverby presents a collection of works giving an in-depth look into the formation, procedures, and aftermath of the Tuskegee Syphilis Experiment. Effectively dividing the book into sections that detail different aspects of the study from various perspectives, she includes journal articles, newspaper reports, excerpted letters and scientific reports, and the voices of several key figures associated with study to frame the narrative of the experiment. Rivers, Eunice, Stanley H. Schuman, Lloyd Simpson, and Sidney Olansky. “Twenty Years of Followup Experience in a Long-Range Medical Study.” Public Health Reports (18961970) 68, no. 4 (April 1953): 391-95. http://www.jstor.org/stable/4588428. As the sole figure who was involved with the Tuskegee Syphilis Experiment for the entirety of its 40-year duration, Eunice Rivers played an integral role as nurse, looking after the subjects and coordinating with the PHS physicians to help them carry out the study. In this report, Rivers documents the procedural aspect of the study, including how the PHS physicians recruited the subjects from Macon County, the process of the regular follow-up examinations that were conducted, and how Nurse Rivers’ friendly relations with the subjects prompted their families to permit the researchers to perform an autopsy. Smith, Susan L. “Neither Victim nor Villain: Nurse Eunice Rivers, the Tuskegee Syphilis Experiment, and Public Health Work.” Journal of Women’s History 8, no. 1 (Spring 1996): 95-113. https://puffin.harker.org/login?url=https://search-proquestcom.puffin.harker.org/docview/203245514?accountid=618. Susan Smith, Professor of History at the University of Alberta, investigates the influence of Nurse Eunice Rivers’ upbringing and the impact of the Tuskegee Movable School to study the truth of her intentions in the Tuskegee Syphilis Experiment. Interestingly, Smith points out that because of her subordinate status as a black female nurse, she had
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no power to challenge authority. Additionally, Smith argues that Rivers, working in public health prior to joining the study, was driven by her public-spirited mentality. Solomon Watson, Martha. “The Rhetoric of Dehumanization: An Analysis of Medical Reports of the Tuskegee Syphilis Project.” In Tuskegee’s Truths: Rethinking the Tuskegee Syphilis Study, edited by Susan M. Reverby, 251-65. Chapel Hill: University of North Carolina Press, 2000. Previously published in Western Journal of Speech Communication 49 (1985): 233-47. This article dissects the rhetorical strategies that the PHS researchers employed in their scientific writing in order to distance readers from the subjects. Martha Solomon Watson, dean of the Greenspun College of Urban Affairs at the University of Nevada, Las Vegas, notes the objective tone and tactful avoidance of any suggestive language that could elicit an emotional response from the reader. Moreover, Watson highlights that the researchers underscore the absolute value of acquiring new knowledge in their reports, giving the experiment its validity and credibility. Stobbe, Mike. Surgeon General’s Warning: How Politics Crippled the Nation’s Doctor. Berkeley: University of California Press, 2014. https://ebookcentral-proquestcom.puffin.harker.org/lib/harker-ebooks/detail.action?docID=1664638. Mike Stobbe, national medical correspondent for the AP, studies the position of the United States Surgeon General, examining the unique and important characteristic of the federal government’s organization that allows it to address issues in public health. With regard to the United States’ response to syphilis in the twentieth century, Stobbe delineates Dr. Hugh Cumming and Dr. Thomas Parran’s roles in the crusade against the disease, pointing out that Parran promoted “syphilophobia” that went against his efforts to encourage the prompt identification and treatment of the infected. “The Tuskegee Syphilis Experiment.” In 1930-1939, edited by Cynthia Rose, 546-49. Vol. 4 of American Decades Primary Sources. Detroit: Gale, 2004. http://link.galegroup.com.puffin.harker.org/apps/doc/CX3490200767/GVRL?u=harker&s id=GVRL&xid=e7924b4b. The correspondence between Dr. Taliaferro Clark, assistant Surgeon General of the Venereal Disease division of the PHS in 1932, and Dr. J. N. Baker, State Health Officer in Montgomery, heralds the beginning of the 40 year-long experiment. Clark, who conceived the idea and saw its development for a year before his retirement, especially notes the value of the significant population of untreated black syphilitics in Macon County. In the second letter, Dr. Hugh Cumming, Surgeon General from 1920 to 1936 who spearheaded the Tuskegee Syphilis Experiment, writes to Dr. R. R. Moton of the Tuskegee Institute, explaining the necessity of Moton’s approval and support for the success of the proposed study. As justification to conduct the experiment, Cumming cites findings from the mass syphilis control program done in Macon County, including a high number of blacks infected with syphilis, most of whom had not received treatment. He follows with the necessary examinations that the subjects would have to undergo, for which cooperation with the Tuskegee Institute would be of great value, and further elaborates that these procedures would lay the foundations for what may be a pivotal
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discovery regarding the necessary, or perhaps dispensable, nature of treatment for latent syphilis. Uschan, Michael V. Forty Years of Medical Racism: The Tuskegee Experiments. Detroit: Lucent Books, 2006. Author Michael Uschan, a correspondent for “Time,” provides a comprehensive overview of the Tuskegee Syphilis Experiment. He makes evident the deceptive nature of the study and outlines the critical developments in the prolongment of the study that would raise important ethical questions and national backlash. Washington, Harriet A. Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present. New York: Anchor Books, 2008. Harriet Washington received the 2007 National Book Critics Circle Award for Nonfiction for Medical Apartheid, which accounts the mistreatment of blacks in medical experiments from the era of slavery to now and the underlying racist pseudoscience that propelled it. Washington, a fellow in ethics at the Harvard Medical School and a senior research scholar at the National Center for Bioethics at Tuskegee University, unveils the dark peripheries of scientific research, from the infamous Tuskegee Syphilis Experiment, which she portrays as an outgrowth of Social Darwinism, to lesser known medical crimes that infused a long-standing deep distrust among the black community toward researchers and doctors. Zimmermann, Ernest L. “A Comparative Study of Syphilis in Whites and in Negroes.” Archives of Dermatology and Syphilology 4, no. 1 (July 1921): 75-88. Accessed January 17, 2018. https://jamanetwork.com/journals/jamadermatology/fullarticle/491990. Ernest Zimmermann, Assistant in Clinical Medicine at the Johns Hopkins Hospital, conducted a comparative study of the progression of syphilis in blacks and whites, with the aim of highlighting any inherent differences between the groups’ responses to syphilis infection that could be attributed to race. Analyzing 1,843 cases, among which there were 596 white males, 521 black males, 297 white females, and 429 black females, this observational study refutes the claim of the PHS researchers that their experiment contributes new knowledge in this field.
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