Voices of Our Fathers: Narrative (Care) Ethics, Trust and Trustworthiness

Abstract

The United States Public Health Service Syphilis Study at Tuskegee was the longest “medical experiment” in the United States. It was an unethical study that harmed 623 black men and their families in Macon County, Alabama. There were no protocols, no (simple) informed consent, and no end date, but there was deception. These men had no idea they were in a study. They were vulnerable to those who they thought were medical doctors of good-will, assigned to their community to help cure their “bad blood.” This chapter follows the narratives of two men who were victims of the Study, Mr. Charles Pollard and Mr. Herman Shaw, and a venereal disease expert, Dr. John Cutler, who refused to admit that he and his colleagues did anything wrong. Positive results came from the Study. Informed consent and Institutional Review Boards as requirement to medical treatment and human-subjects experiments. Additionally, the Syphilis Study and men in the Study can teach us what it means to involve empathic care in our ethics and how to understand the role of trustworthiness in our values.

Public Health Ethics Issue

Between 1932 and 1972, 623 male residents of Macon County, Alabama were selected to participate in what has come to be known as the most pernicious human-subject experiment and public health violation to ever occur in the United States. Rather than the establishment of a protocol to prevent syphilis, the United States Public Health Service (USPHS) named their nefarious study the “Tuskegee Study of Untreated Syphilis in the Negro Male.” Later, many observers justifiably referred to it as “The Tuskegee Experiment” (Jones1993). Post 1972, the term “experiment” gained traction as a term for unethical medical “studies.” A medical experiment requires written protocols that are consistent with the scientific method. This includes objectives, experimental design, start and end dates, a protocol for peer-review, and ethically (if not yet, legally) informed consent to educate participants on every aspect of the study. Assuredly, the title of the study—Tuskegee Study of Untreated Syphilis in the Negro Male—bears witness to the intended consequences: treating and preventing the disease was not essential and promoting health was not a priority. The callous indifference of the USPHS to the human rights of these men and their families resulted in a community in peril for four decades and a nation forced to again grapple with its racist past, like slavery and jim and jane crow institutionalized racism.

This narrative is a unique retrospective focusing on a few of the public health principles that were violated and, consequentially, reformed as a result of the infamous study (hereafter referred to as the USPHS Study or the Study). The USPHS Study has polarized public health conversations for decades, fostering a debate between proponents of the study (the doctors) and opponents the Study (defenders of the human rights of the men and their families). Proponents of the Study argue for its ethical justification as a positive act for the African American community. A positive action (or a positive duty) in moral philosophy is the ethical obligation to do an act. A positive duty is an act of beneficence; it is an act of doing good, like keeping promises and truth-telling. On this moral assertion the proponents of the Study hung their metaphorical hat. Based upon historical documents and communication, they apparently believed that their actions were right (and perhaps righteous). They were doing a good act to benefit the black community in Macon County, Alabama and beyond.

A negative action (or a negative duty) in moral philosophy is a prohibition to avoid bad behavior; it is the moral obligation or duty to not do; it is the act of refraining. The Ten Commandments, for example, is filled with moral prohibitions: do not commit murder, do not steal, do not lie or deceive, etc. With respect to medical doctors, the most prominent prohibition (negative duty) is their duty to primum non nocere—above all,do no harm. Doctors have an ethical obligation to act upon the negative duty, imbedded in their Hippocratic Oath, to do no harm. Assuredly, the proponents of the Study seemingly believed they were acting in accord with both positive moral duties and negative moral duties, but this paper finds that the two narratives—the doctors, represented by John Cutler, and the human-subjects, represented by Mr. Charles Wesley “Charlie” Pollard and Mr. Herman Shaw—do not comport well ethically.

The opponents of the Study argue that it was a deceptive, unethical and racist act, serving no meritorious purpose. Although Dr. John Cutler, a senior surgeon and the acting chief of the venereal disease program in the USPHS, was not the architect of the Study, he was the head and most outspoken apologist for the Study during the 1960s until it ended in 1972 and remained so until his death in 2003. His words and actions are offered in sanguine contrast to the accepted beliefs of the men in the Study. On the one hand, Cutler unapologetically offers his course of action as a positive duty: “We were dealing with a very important study…to actually improve the quality of care for the black community” (Nova 1993). On the other hand, President William Jefferson Clinton, in his 1997 apology to the men and their families, offers a stark contrast to Cutler: “It was a time when our nation failed to live up to its ideals, when our nation broke the trust with our people that is the very foundation of our democracy” (Clinton 1997). Between the tension of these two views is the lived experiences of African American men and their families. These men witnessed, and were the recipients of, public health at its lowest ethical state.

There are plenty of public health ethics issues associated with this unethical study, but in this paper, we will consider three issues by exploring the dichotomy between Dr. Cutlers’ view of the study and the voices of two outspoken men who were participants in the Study and also attended the Presidential Apology: Mr. Charles “Charlie” Pollard and Mr. Herman Shaw. We do not claim that the men in the Study were identical from a socioeconomic or educational perspective, but the story of these two men is illustrative of the Study’s impact on the participants. These three issues are as follows:

• 1. The failure of the USPHS to protect a very vulnerable African American population, particularly at a time when racist policies, laws and discriminatory energies were overtly practiced;

• 2. The ethical importance of trustworthiness in public health recommendations and actions;

• 3. The effect that the legacy of the Study has had on important biomedical studies and clinical trials (e.g. informed consent, institutional review boards and modern public health ethics.

There are other fundamental public health ethics issues requiring consideration: (1) the nature of public health ethics, (2) its overarching principles, and (3) the method in which it is grounded. The primary nature of public health ethics is population based. Therefore, as an applied ethical theory it is often grounded, normatively and metaethically, in utilitarianism. This grounding makes good prima facie sense because the strongest justification for utilitarianism is its prioritizing of the needs of the many over the needs of the one, or the few. Utilitarianism endorses sacrificial acts as a good if there are good consequences. However, as a utilitarian approach does not consider the happiness of the minority or consider how empathy and care contribute to overarching happiness, it has no purposeful value to the minority and may (at least theoretically) promote harm over beneficence.

The USPHS Study, operating from this normative public health point of departure, was deceptive because the investigators never told the men they were part of an experiment, study or “sacrifice.” As we will show in our discussion, the men in the Study were lied to. They were deceived into believing that their well-being was important, their healthcare was a priority, and their lives mattered. Inherent in all deceptions is a kind of oppressive mechanism that sways a person’s choice in a way that is often not in their best interest.

It is not presumptive to imagine how the men initially felt about the doctors who were “doctoring” on them (Nova 1993). The men felt that the doctors’ actions were grounded in empathy and care (as most people would assume about their own doctors and nurses)—that they were medical practitioners of high character who genuinely prioritized the men’s well-being. The men had no basis for believing that the vocation “doctor” wasn’t synonymous with “trustworthy caregiver.” It took 40 years before they knew there was an asymmetry between the two. Consequently, based on the initial point of view of the men, a narrative could be constructed that this was a study grounded in normative values. However, in reality, the men were subjected to a misguided utilitarian ethical framework that envisaged them as uneducated Negro “poor country boys” rather than being based on an existential and phenomenological medical value system, what is defined today as empathy and (relational) care ethics, based in virtue and character. In the discussion, we will use this ethics of care framework to contrast the ethical obligation to protect the best interest of the men and their families with the indifference that the USPHS demonstrated.

Background Information

For forty years, 623 black men in Macon, County, Alabama were unknowing participants in a study, orchestrated by the U.S. government, that failed to disclose to them they were in a race-based study to not treat their syphilis disease, subjected them to excruciatingly painful spinal “punctures,” surveilled their movements within the United States to ensure they did not receive treatment even when a cure for syphilis was available, and autopsied their bodies.

By the time the Study was terminated in 1972

• 74 of the test subjects were alive,

• 28 had died of syphilis,

• 100 died of related complications,

• 40 of their wives were infected,

• 19 children were born with congenital syphilis (Katz and Warren 2011, xi).

On July 24, 1973, Mr. Pollard, along with Attorney Fred Gray, brought a lawsuit against the government. Jurisdiction was invoked under the Fourth, Fifth, Eighth, Ninth, Thirteenth, and Fourteenth Amendments to the U.S. Constitution; civil rights laws [42 USC Section 1981; Section 1985 (3); and Section 2000(D)], the Federal Torts Claims Act (28 USC 2671); federal common law; and the Constitution, statues, and common law of Alabama (Gray 1998, 84).

As described by Attorney Gray, the purpose of the lawsuit was to “…redress grievances by damages and injunctive relief in order to secure for the plaintiffs themselves, and the class they represented, protection against continued or future deprivation of their rights by the defendants. The goal is to get the government’s full attention. Originally, $1.8 billion in damages was sought for the surviving participants and the heirs of those who had died” (Gray1998, 84).

In the complaint, Mr. Gray alleged the following facts:

• 1. The participants were poor, southern, rural,African Americans, of limitededucation, who knew nothing of their roles as experimental subjects.

• 2. The Tuskegeesyphilisstudybegan in 1932 and was announced by employees of the U.S. public health service as a newhealth careprogram beginning inMacon County,Alabama. The notices were circulated throughout the county by mail, and African Americanschools, and African Americanchurches. OnlyAfrican Americanswere given the notices, and only African Americanmales were subsequently selected to participate in the program.

• 3. The participants were never told that they were being solicited to be used in an experiment.

• 4. The employees of the governmentpurposely did not inform the participants when they were found to havesyphilis, and intentionally withheld this information from them.

• 5. The governmentrepresented to the participants or gave the impression by words and actions that they were receiving adequate medical treatment for all of their ailments. Such representations are impressions were false and were known to be false by the government. However, each of the participants reasonably believed such representations and participated in experiment for over 40 years.

• 6. The participants were never advised that any of them hadsyphilisand they were never treated forsyphilis.

• 7. The participants never gave theinformed consentto be subjects in any such experiment.

• 8. No white persons were solicited or used in the study.

• 9. Those selected will use any program of control genocide solely because of their race and color in violation of theirrights, secured by the constitution and laws of the state ofAlabama.

• 10. The governmentexploited the participants in violation ofrightsguaranteed on the 5th, 9th, 13th, and 14th amendments to the constitution of the United States, and article 1, section six of theAlabamaconstitution of 1901. Playtest further alleged that they were injured physically and mentally. The afflicted with distress, pain, discomfort, and suffering. Some died as a result of participating in the study (Gray1998, 87–88).

In 1974, Attorney Gray was successful at securing a $10,000,000 settlement which was divided into the following four categories:

• 1. Living syphilitics receive $37,500.

• 2. Heirs of deceased syphilitic’s received $15,000.

• 3. Living controls received $16,000.

• 4. Heirs of deceased controls received $5000 (Gray1998, 98).

The Presidential Apology

On May 16, 1997, President Clinton issued a formal apology for the USPHSSyphilisStudy (Clinton 1997). In addition, President Clinton made the following commitments to begin rebuilding the trust that the study had violated:

• 1. At Tuskegee University, a federal grant would be made available to establish a center for bioethics in research and health care;

• 2. A commitment to community involvement to “begin restoring lost trust;”

• 3. A commitment to strengthen and increase training in bioethics, nationally.

Despite their advanced age, five of the living Study participants were able to attend the Apology held in the East Room of the White House – Mr. Charles Pollard, Mr. Herman Shaw, Mr. Lester Scott, Mr. Carter Howard, and Mr. Fred Simmons. Mr. Fred Simmons reported that he was 110 years old. Mr. Shaw was less of a stereotypical “country boy” and more of an astute and singular, albeit deeply irritated, autonomous man. Hence, Attorney Fred Gray chose him to represent the men of the Study and their families at the Apology and to introduce the President of the United States.

Approach to the Narrative

In 1973, one year after the termination of the SyphilisStudy, Senator Edward Kennedy and the United States Senate held hearings on human experimentation. There were four Study survivors present at the hearing, Mr. Charles Pollard, Mr. Herman Shaw, Mr. Lester Scott, and Mr. Carter Howard. There is greater documentation for Mr. Pollard (who brought the lawsuit) and Mr. Shaw (who served as spokesman for the men at the Presidential apology); therefore, we focus the narrative on these two men. Mr. Charles Pollard saw himself first as a victim, then as a survivor of an unethical force more potent than his “just a country boy” deep South stereotype. Mr. Herman Shaw saw himself as a survivor as well, but he also believed he was treated as “one of the study’s ‘Guinea hogs’” (Reverby2009, 111).

However, Mr. Pollard’s and Mr. Shaw’s narrative is only partially clear if it is constructed independent of the doctors and system that created and maintained the study for four decades. The men’s interpretation of the Study was constrained by deception, and the doctors’ interpretation of the men was constrained by racism. So, we will first present the voice of Dr. John Cutler, the most vocal defender of the study after it was terminated. It is clear from his voice that he was convinced of the importance of the Study and its ethical congeniality with both positive and negative duties. On the other hand, Mr. Charles Pollard and Mr. Herman Shaw’s narrative resembles the lived experience of the men in the Study. Thus, their narrative is more precisely (and better understood as) a counter-narrative to the background narrative of the doctors. Behind the scenes of the lived experiences of the men of Macon County, Alabama, the USPHS in Washington, D.C was engaged in pseudoscience and exploitation of black vulnerability.

We reviewed sources from historians, academics, journalists and attorneys who have done an admirable job documenting the Study’s human tragedy. The most significant sources for this narrative compilation come from the writings of attorney Fred Gray, two historians (Susan Reverby and James H. Jones), Mr. Pollard and Mr. Shaw’s testimony at the 1973 Congressional hearing, a 1993 Nova documentary about the Study (TheDeadly Deception), and an anthology of the Study published by Reverby in 2000. Cutler’s narrative is derived from the same sources.

Dr. John Cutler’s Narrative

Dr. John Cutler is on record as the staunchest defender of the Study. Two decades after the Study ended, and five years before the Presidential Apology, Nova broadcast Deadly Deception. Obvious from the title is the fact that the producers, along with millions of Americans and others, believed that the “Study” was an act of (fatal) deception. Nevertheless, Cutler’s defense of the Study was still quite formidable. The following statements by Cutler from the Nova documentary illustrate his support of the Study:

It was important that they were supposedly untreated, and it would be undesirable to go ahead and use large amounts ofpenicillinto treat the disease, because you’d interfere with the study (Nova 1993).

We were dealing with a very important study that was going to have the long term results of which was to actually improve the quality of care for the black community—so that these individuals were actually contributing to the work towards the improvement of health toward the black community, rather than simply serving as merely guinea pigsfor the Study. And, of course, I was bitterly opposed to cutting off the Study for obvious reasons (Nova 1993).

In 1988, Dr. Cutler co-authored a paper, “Venereal Disease Controlled by Health Department in the Past: Lessons for the Present” which described what he viewed as his and his contemporaries’ accomplishments relating to the control syphilis (Cutler and Arnold 1988). Interestingly, the timeline for the successful controlling of syphilis was during the same time period the syphilitic men in the Study were not given care. In fact, they were denied care. In this paper, Cutler and Arnold praise the Surgeon General of the United States, Dr. Thomas Parran, and his work in the eradication of syphilis; they even highlight the need for clear/necessary protocols if syphilis was to be controlled—but they never mention the Study. The following excerpts from the Cutler and Arnold paper describe the work of the USPHS to curtail syphilis:

By the mid-1930s the seriousness of the VDproblem was beginning to come back into the medical and public consciousness, primarily because of the leadership of Dr. Thomas Parranwho becameSurgeon Generalof the USPHSin 1936, a year in which the USPHSbudget for VDcontrol was $58,000. By then the serious problem of disability, death rates, and cost of long-term effects ofsyphilisalone were again evident nationwide. A gradual, well-planned move to reestablish a full-fledged national VDcontrol program began. It is relevant to remind ourselves that the problems Dr. Parranfaced then are sharply mirrored in the current public and professional attitudes about AIDS. For instance, because of the planned use of the word “syphilis” in a radio program to be broadcasted nationally, theSurgeon Generalof the USPHSwas denied permission to air a program. However, shortly after this episode, the Reader’s Digest was concerned and farsighted enough to publish and article entitled “Why Don’t We Stamp OutSyphilis?” which focused national attention on the extent of the problem. There was a highly supportive public response, matched by strong support from the medical and public health communities which were aware of the problem but had been unable to move effectively because of the lack of adequate financial and political support. It should be noted also, as is evident today, that in the period before the resurgence of public interest and availability of governmental funds forresearchand program implementation, the medical and public health schools and voluntary agencies have been carrying out basic and clinicalresearchonsyphilisand gonorrhea as well as public health control studies (Cutler and Arnold 1988, 373).

Cutler and Arnold describe Surgeon GeneralParran’s efforts to revitalize the national VD control program by quoting a 1951 report on the history of the USPHS.

Thus, for the first time in the history of the United States, the Federal governmententered into a partnership with the States and Territories for the protection and promotion of the health of the people. For the first time the public health service was on the legal authoritycast in the role which it had so long wish to play, that of partner, advisor, practical assistance to the State’shealth departments, and through them to municipal and local health services to be accomplished with federal aid, and to leave the administration of these activities to the states. Consultant and technical services have been provided for the states in the planning of both general and specific programs. Personnel of the public health service frequently have been assigned to the States upon requests to administer health programs (Williams 1951 as cited in Cutler and Arnold 1988, 373).

Cutler and Arnold emphasize that Parran’s VD control program was based on basic public health principles.

The program, inaugurated by Dr. Parran, was based upon the nine basic principles of public health control ofsyphiliswhich he had formulated:

• A trained public health staff,

• Case finding and case holding,

• Premarital and prenatal serodiagnostic testing,

• Diagnostic services available,

• Treatment facilities available,

• Distribution of drugs for treatment,

• Routine serodiagnostic testing,

• A scientific information program,

• Publiceducation.

It should be noted that concurrent with the public health concerns aboutsyphilisand the resulting political and public health program responses there had been a highly active and productiveresearchprogram carried out both nationally through cooperative efforts with the University community and the USPHSand, internationally, through the Health Organization of the League of Nations (Cutler and Arnold 1988, 374).

Cutler and Arnold describe the treatment available for syphilis in the 1940s. However, the men in the study received no treatment.

With the beginning of World War II, the need for large scale application of the shortened, intensive or arsenical-based treatments requiring up to 10 weeks in hospitals was recognized: the increased patient mobility in civilian as well as military populations due to wartime needs cause problems in completing therapy. Starting in 1942, the so-called Rapid Treatment Centers (RTCS) were begun and by 1946 had been established in 35 States and the District of Columbia, most of them under the state health departmentmanagement but with federal financial support as strong professional cooperation. By 1946 the USPHShad been given congressional responsibility for national administration of the program; $5 million was appropriated to subsidize the centers and to pay the local general hospitals which were also important resources for treatment—usually local-government administered (Cutler and Arnold 1988, 374).

As pointed out by Dr. George A. Silver in his article “The Infamous Tuskegee SyphilisStudy,” Cutler and Arnold never mention the Syphilis Study in their 1988 paper (Silver1988, 1500). Silver objected to Cutler’s honoring Dr. Parran without honoring or even acknowledging the Study participants. Dr. Cutler’s response to Silver was quite shallow.

I understand and accept Dr. Silver’s feelings about the Tuskegee Study. However, there seem to be no reason to mention or any other study in our article; all of the studies contributed to the program developments which led to the successes of the national VDcontrol program. I hope we can apply the knowledge gained from our past errors as well as our past successes. We need to deal with AIDS in the same nonjudgmental public health manner that made our past accomplishments in the control of gonorrhea andsyphilispossible (Cutler1988, 1500).

Mr. Charles Pollard’s Narrative

Mr. Charles Pollard was born in 1906, 26 years later he was deceived and thrust into history because he was told he had “bad blood,” which was a grab-bag term for an array of anemias, disorders or blood pathogens. The use of this term, sometimes euphemistically, was a deceptive substitute for syphilis, the contractable and potentially fatal venereal disease. Mr. Pollard was involved in the study from its inception to its termination 40 years later. He didn’t know that he was a participant in a study or an “experiment,” but when the story broke about the medical violation taking place in Macon County and Tuskegee, he was approached by journalists, governmental officials and other investigators seeking information.

In 1973, one year after the Study was exposed to the public thanks to the efforts of Bill Jenkins, then a USPHS statistician, and Peter Buxton, a venereal disease interviewer and investigator from San Francisco (Warren et al. 2019a, 643–645; Reverby2009, 82–83), Mr. Pollard testified before the Health Subcommittee of the Committee of Labor and Public Welfare led by Senator Edward Kennedy. Excerpts of Mr. Pollard’s testimony and his statements from the Nova documentary are presented to illustrate his reflections on the Study.

• Mr. Pollard: I was born in 1906, but in 1933 they said I hadbad bloodand was working on it. I told the lady how they treated me every year. They treated me with a, with a shot—that spinal shot. I don’t remember the month it was in 1933, I do remember it was 1933.

• Back in 1932, I was going to school back then and they came around and said they wanted to have a clinic blood testing up there. They came around and give us the blood tests. After they give us the blood test, all up there in the community, they said we hadbad blood. After then they started giving us the shots and gave us shots for a good long time. I don’t remember how long it was. But after they got through those shots they give me a spinal shot. That was along in 1933.

• They treat me every year. They would come down and see us every year. Of course, during that time, after I taken that spinal puncture, I wore a rubber belt around my stomach. It had a long strand around it and I would run it around, come back in front and tie it in a bowknot. They used a little ointment or salve that I rubbed on my stomach. I reckon I wore it a year or six months, something like that. After then they would see us once a year up to 25 years.

Senator Kennedy asked Mr. Pollard how he came to know that he was a part of a study.

• Mr. Pollard: The people contacted me in the stockyard…that is where I was working when they contacted me. A heavy built lady contacted me. My 17-year-old grandboy and me were taking some cows down there for the summer. She came and asked me about Charles Pollard. I told her I didn’t know a Charles Pollard, but I knew a Charles Wesley Pollard. She said she had been all over and asked about me but nobody had seen me. But I had been on the payroll bringing cows down there. She told me to get my cows unloaded because she wanted to talk to me, and that is what I did. She asked me wasn’t I in a study or a clinic back 40 years ago…I had done forgot about that, but she wanted to know the story of it. So, I told her.

Senator Kennedy then asked, “Were you a little mad that you were sort of being used in a test that you didn’t know about?”

• Mr. Pollard: Well, at that time, you see, I didn’t know nothing about it until well after I got back home. I had taken the Birmingham News. I had been taken it for 25 or 35 years. It was there. What I told the lady was in the Birmingham News that evening. So we read it. Got to reading it and talking about black men inMacon County. Of course, the week before then they had told me the news there about 400 or 600 men, whatever it was, the black men ofMacon County, but I didn’t give it even a thought, until after she told me that. That was on a Tuesday when she saw me.

• I was very busy inMacon County. I participated in many civic functions, one of them was theMacon CountyDemocratic Club. I was a member there for many years, but I never did share with anyone what was going on with me. I just forgot about everything and put it all behind me—until that lady came to the stockyard.

• I went to Attorney Fred D. Grayand asked him if he read the newspaper article about “bad blood” and how they experimented on me and others for over 40 years. He asked me questions and I told him everything I knew about it.

In response to Senator’s Kennedy’s inquiry regarding whether the doctors’ demonstrated any interest in caring for Mr. Pollard and the other men after the Study ended, Mr. Pollard’s recollection was one of abandonment:

• Mr. Pollard: The Governmentdoctors haven’t come by lately. I had been visiting a doctor, some individual doctors. Of course, I had a bad case of arthritis last year, in the last week in January. I went to Montgomery to a doctor for a month. He give an X-ray on me then sent me back to the bone specialist in Tuskegee. He doctored on me for about a month and I got on crutches and stayed on them. He finally told me to go back home. If it never did get no worse, don’t come back. So I am still taking medicine capsules that he gave me. That was after he gave me that shot.

As to whether Mr. Pollard was interested in the government doctors given what he came to learn about the Study, he responded to Senator Kennedy,

• I don’t want no parts of it. I was fixing to say I was fixed to go to Birmingham when thepenicillincame out, but the nursetold me I wasn’t able to go up there. So they turned me down. I don’t want no more part of it.”

Twenty years after the Senate hearings, on January 26, 1993, Nova interviewed Mr. Pollard for the documentary, Deadly Deception. He was almost 90 years old at this point, but his cognitive and emotional recollection of the events were quite singular:

• Mr. Pollard: And when this first started up, I didn’t know nothing—just a country boy, as they say. And when they got down here inAlabama, they found what they wanted—they just went todoctoringon us. And said they gon treat us. They just said ‘bad blood.’ I thought they were trying to treat and cure mybad blood. They would just give us the pills, and sometimes they would give us a little tablet to put under our tongues for sore throats. Then they would give us the green medicine for a tonic to take after meals.

• It was pretty bad—thatspinal tap—course, I did along pretty well with it, but uh … I stayed in the bed a week or two. After 25 years they gave me $25—a $20 and a $5 bill. Then they gave me a certificate and a picture with six of us on there—“U.S. Public Health Service. This certificate is awarded in grateful recognition of 25 years of participation in the Tuskegee MedicalResearchStudy.” I was glad to get the $25 and I used it. We would have lunch when we went over to the Veterans Hospital. We would go to the canteen and have lunch. A lot of times I went in my own car and I would help the nursecarry the boys down there sometimes, a lot of times. I would always go in my car a lot of times.

In the Nova documentary, speaking about his feelings about the Study, Mr. Pollard quietly said, “It did make me, you know, I might have said some curse words—when I was by myself—but they ought to have been ashamed of themselves. I wouldn’t have did them like that” (Nova1993).

Mr. Herman Shaw’s Narrative

Mr. Herman Shaw was a resident of Macon County, Alabama. In 1997 when he presented President Bill Clinton to offer the Apology, he was one month shy of his 95th birthday. In 1932 he was a young man with limited education. He had a family but no healthcare, which was not irregular as the country was emerging from the Great Depression. This “Hoover Panic” (as he calls it in his testimony) was a time when families were struggling, and free healthcare was a welcome relief. In the Deadly Deception he explains how it was that he unwittingly became involved in the Study:

• Mr. Herman Shaw: The way I heard about it was through a rumor that the people, and this came out ofMacon County, said that you can get free medicine for yourself, and things of that kind. And therefore, I went. On that Saturday afternoon when we went over there, they said we would get free medicine, that wouldn’t cost us anything and the doctor… We will get freedoctoring (Nova 1993).

At the Senate Hearings, Mr. Shaw was able to very clearly articulate his experience. He was 70 at the time. He expressed his lived experience about how the surveillance program that prevented the men from receiving medical attention from other medical providers.

• Mr. Howard Shaw: For those who are living and remember, and for those who just read about it, in 1932 we began to emerge from what was known as the Hoover panic. We did not have adequate money, in other words, to care for ourfamilies. This offer was made in 1932 as free medication known as a blood test. I entered it in 1932 and I was affiliated with it ever since.

• Every four years they would take our blood. They would transport us to the Tuskegee VA hospital and give us a thorough examination. In the late 1940s—I do not remember the exact date—they sent me to Birmingham. We left about two o’clock and we got to Birmingham before dark. They saw nurseroaming through the crowd. She said she had been worried all night. She that she had been looking for a man that was not supposed to be here and his name is Herman Shaw. Naturally I stood up. She said come here. She said what are you doing up here. I said I do not know, they sent me here. They got me a bus and sent me back home. When I notified the nurseof what happened inMacon County, I did not get any response.

• Senator Kennedy: Did you feel during this period you were being cured, that they were looking after your medical needs?

• Mr. Herman Shaw: I have never had any treatment whatever.

• Senator Kennedy: What did they tell you when they looked at you blood? Did they tell you it looked good or it looked bad?

• Mr. Shaw: I just got a slap on the back and they said your good for 100 years. That is all I ever had.

• Senator Kennedy: How many years have they been slapping you on your back?

• Mr. Shaw: Forty years. Every year they would give us a white tablet for pain and a little vial—I guess it was some type of tonic. Every year for 40 years up to now, we had two different doctors. We would never get the same doctor back each time. Slap on the back and said I was good for 100 years. I guess it was routine.

The salience of Mr. Shaw’s narrative has been broadly articulated in various spheres since the end of the Study in 1972 until his passing almost three decades later. However, as shown in the following excerpts, no articulation has been clearer than Mr. Shaw’s short speech and introduction of President Clinton at the Apology in 1997.

• On behalf of all the survivors who are here today, and who could not attend, and on behalf of the heirs of my fellow participants who have died, I wish to thank President Clinton for inviting us to the White House. It has been over 65 years since we entered the program. We are delighted today to close the very tragic and painful chapter in our lives.

• We were treated unfairly and to some extent like guinea pigs. We were not pigs. We were not dancing boys as we were projected in the movie, Miss Evers’ Boys. We were all hardworking men, not boys, and citizens of the United States. The wounds that were inflicted upon us cannot be undone. I am saddened today to think of those who did not survive and whosefamilieswill forever live with the knowledge that their death and suffering was preventable…

• This ceremony is important because the damage done by the Tuskegee Study is much deeper than the wounds any of us may have suffered. Is speaks to ourfaithin governmentand the ability of medical science to serve as a force for good.

• In my opinion, it is never too late to work to restorefaithand trust. And so, a quarter of century after the Study ended, President Clinton’s decision to gather us here; to allow us to finally put this horrible nightmare behind us as a nation, is a most welcomed decision. In order for America to reach its fullest potential we must truly be one America—black, red and white together; trusting each other, caring for each other, and never allowing this kind of tragedy which happened to us in the Tuskegee Study to ever occur again (as cited in Reverby2000, 572–573).

Discussion

Considering an empathic (relational) care ethical approach is useful for exploring the ethical implications illustrated by the narratives of Mr. Pollard, Mr. Shaw, and Dr. Cutler. Of the possible major approaches (e.g., deontology—focusing on rules and obligations or consequentialism—focusing rightness on outcomes, results), we find that care ethics, is most germane to this narrative. There are critics of care ethics who decry the notion of autonomy in care. They wonder, how can a person be autonomous if she or he is dependent on others? We suspect that Cutler and other study apologists may have relied upon this to defend their heteronomous (i.e., patriarchal/matriarchal) approach to ethics. A heteronomous approach fosters a hierarchical belief that another’s body can be used with impunity.

Three concepts from care ethics theory are relevant to this discussion. First, as articulated by ethicist Grace Clement, “autonomy cannot be achieved individually. In fact, we learn to become autonomous, and we learn this competency not through isolation from others, but through relationships with others. An individual’s autonomy is nurtured through the care of others” (Clement1998, 24). As illustrated by the title of the Study (…Study of Untreated Syphilis…), the objective of the Study was the opposite of care. Thus, autonomy and agency were either impossible or unlikely. If the men in the Study were in a caring relationship with their “doctors” their autonomy would have been enhanced and respected.

Second, as emphasized by ethicist Michael Slote, empathy and altruism are a critical positive motivation of care (Slote2007). Slote argues, “empathy is a crucial source and sustainer of altruistic concern or care about (the wellbeing of) others” (Slote2007, 15). He further argues, “differences in strength or force of empathy makes a difference to how much we care about the fate of others in various different situations” (Slote2007, 15). Empathy is always other-regarding. Like compassion, it is an emotional response to the needs of others. Correlated with care, empathy motivates an agent to feel for others. And care is an extension from an agent to seek the wellbeing of another. It does not appear that Cutler and his fellow doctors empathized with the men in the Study. By the time Cutler became involved with the study there was a cure for syphilis, but it was withheld from the men.

Third, we can care most if we find ourselves in a relationship with another person, especially if the person has relatable traits or experiences. Mr. Pollard and Mr. Shaw are now dead; nevertheless, their story remains. Empathic care relations have more value if the relationship is based on respect (i.e., they are subject/subject relationships rather than subject/object relationships). We tend to respect others who are our equals far more than those who are simply objects to us. When we listen attentively to another’s voice, another’s story, as an equal subject, we tend to be intentional and open, and remain committed to the relationship (this is a caring-for and caring-about relationship). Subject/subject relationships are other-regarding and emphasizes difference. Subject/object relationship are often narcissistic, egoistic, and indifferent to othering.

Each life is and has a story. Using a care ethics approach, specifically the provision of empathic care, allows us to see the world through the eyes of others, to understand others’ life story. Mr. Pollard and Mr. Shaw’s story is a sharing of themselves; it is offering a piece of who they were. As time rolls on Mr. Pollard, Mr. Shaw and the other study participants have become metaphors for human biomedical misappropriation of power and empathic disregard. In life they were disempowered by the powerful, but there is something empowering about the ontological and existential dimensions of these men. These dimensions are contained in their narratives. Their intimate story is offered for the purpose of empowerment rather than (re) exploitation or disempowerment. Mr. Pollard and Mr. Shaw lived their reality without expectation of positive outcomes—(e.g., millions of dollars to Tuskegee University to establish the singular, National Center for Bioethics in Research and Health Care, public health ethics virtue theory, or public health policy). Their story is one of pain, victimization and survival in community with others who were similarly affected.

There are many themes at work in the narrative: deception, exploitation, remembrance, betrayal and abandonment are among them. Notice Mr. Pollard’s statement to the woman investigator who searched him out at the stockyard, “I had done forgot about that, but she wanted to know the story of it. So, I told her.” The deception and exploitation was so convincingly thorough that he forgot about it. This not remembering speaks to the culture of the South specifically and America more generally. It is the disposition of any oppressed person or group that sees the state as permanent—normal.

There was nothing unusual about the exploitation Mr. Pollard, Mr. Shaw and their fellows faced. For them, their experience of exploitation and apathy was normal; it wasn’t strange at all. As a matter of fact, strange would have been demonstrative empathy and care, which is what they were deceived into believing they were receiving. The hard-working black men in Macon County, some of whom were share-croppers, were given less consideration than Al Capone the notorious gangster, murder, bootlegger and tax evader. In 1942, ten years after the Study began, care ethics was adequately demonstrated on Capone’s behalf as he was among the first recipients of penicillin for treatment of syphilis (Smee 2018). Mr. Pollard and Mr. Shaw, and the other Study participants were denied penicillin.

Perhaps if letting these men go untreated for a greater societal good, a clever act-utilitarian could persuade some like Dr. Cutler as to the Study’s merit, but with respect to empathy and relational care ethics, there is no version of this tragedy that demonstrates ethical behavior. Experimenting on humans without letting them know, and without their consent, is unethical. The men thought they were patients. Caring about the autonomy and agency of another human being is not negotiable. Receiving and providing empathy and care is what it means to be human. Deception and exploitation are inhumane actions.; they are what it means to be inhumane.

Regarding remembering, Mr. Pollard and Mr. Shaw’s memory remained quite singular; they never forgot. A motivating factor in their remembrance was that the deception and exploitation were foundational to betrayal and abandonment. This was evident in two major ways: surveillance of the men to ensure compliance with the USPHS objectives and abandonment of the men when the Study ceased. The government doctors did not offer these men 40 years of “care” for altruistic reasons. They came around for egoistic reasons—their moral compass bent to their own self-interest. This action and attitude were violations of every major normative ethical theory, including deontology, utilitarianism and virtue ethics. When it was no longer in their best interest to offer even minimum care to the men, they abandoned them to find their own medical practitioners. But this abandonment wasn’t always the case. For forty years the USPHS paid attention to the men. They established a surveillance system to ensure the men would not receive medical attention from other providers. No empathy was offered to these men as care was denied. The Hippocratic injunction to “do no harm” was an abstract thought for these doctors.

Mr. Pollard and Mr. Shaw’s story is an obvious contrast to Dr. John Cutler and other apologists for the study. They failed to see anything wrong with what they were doing. Even the spinal tap was not sufficiently painful to deter its usage, even though it granted no significant positive ends. Cutler is not at all ambivalent about the SyphilisStudy. He quite clearly states that the results of the study will improve the quality of care for the black community. He believed that the men were contributing to the improvement of health in the black community and was bitterly opposed to terminating the Study.

On November 6, 1951, Sidney Olansky, Chief of the Division of Venereal DiseaseResearch Laboratory, wrote to Cutler, “Dear John, We agree wholeheartedly with your premises for the validity of the study, your arguments for the importance of this follow-up, and your recommendations for the clinical examination” (Reverby2000, 99). Cutler’s argument that it would be “undesirable” to use “large amounts of penicillin to treat the disease” is in itself a violation of the Hippocratic Oath he vowed to uphold, particularly the stanza, “I will abstain from all intentional wrong-doing and harm, especially from abusing the bodies of man or woman, bond or free.” Do no harm is the common phrasing. But in the minds of Cutler and his colleagues, they were not committing harm. For Cutler and his colleagues, “the validity of the study” (i.e., the argument that the Study should be prioritized over all other interpretations) or the cost-benefit calculus of the Study was sacrosanct—it was an investment in something noble, regardless of other interpretations. Olansky continues, “We have an investment of almost 20 years of Division interest, funds and personnel; a responsibility to the survivors both their care and really to prove their willingness to serve, even at the risk of shortening life, as experimental subjects. And finally, a responsibility to add what further we can to the natural history of Syphilis” (Reverby2000, 100). The proponents of the Study were very clear: the Study was a noble act; there was no ambiguity with respect to their interpretation, even when it meant the direct infliction of pain for no curative end, which is fully in view with Olansky’s words to Cutler, “Careful studies of spinal fluid and neuromuscular system are advised.”

The Study has had some unintended consequences that continues to reverberate and compromise the health and healthcare of African Americans. One consequence is the distrust the overwhelming majority of African Americans (and other people of color) with the medical and research community. In 2015 less than 5% of African Americans participated in clinical trials (the numbers have increased to 9% in 2019) versus 72% participation of their non-Hispanic white counterpart (Woodcock et al. 2019), even when it is for their positive benefit (Warren et al. 2019b; Hodge 2018). The institutional memory of the USPHS study has been passed down through the black community for decades, leading to distrust for generations and future generations to come. Very few African Americans have taken the time to investigate what really took place, but the power of folklore, anecdotes, and manifest distrust, have resulted in the belief that there is a “site of memory” (Katz and Warren 2011, 29–40). Other historical evidence of medical malpractice and bad faithresearch has been enough for African Americans to be reluctant to participate in clinical trials. The effect of the Study has had negative public health ramifications far beyond what was anticipated.

No scholarly consensus exists about whether information derived from unethical research practices should be used for positive ends. However, positive effects clearly have resulted from the public revelation that exposed the Study and its aftermath. These positive effects include the establishment of the IRB process in the United States for all human subject research receiving government funding and the enactment of federal regulations governing such research. They also include the establishment of the Tuskegee National Center for Bioethics in Research and Health Care, and the raising of awareness of African Americans of bioethical issues. These regulations and the attention the exposure of the study gave to ethical issues in research shaped public policies and the outlook first of bioethics and subsequently of public health ethics. These positive developments, it should be stressed, were unintended positive consequences of the Study but in no way retroactively justify it.

Certainly, these policies have achieved positive social justice ends; no doubt lives are safer and better off now—but are the safeguards that resulted from the Study sufficient? It is never, I think, wise to believe that, once established, safeguards alone can suffice. New occasions may always arise that temp researcher to pursue their own agenda in ways that jeopardize the safety and autonomy of research subjects. Therefore, public health ethics needs to remain vigilant and continue to play a role in the regular updating and revision of public health policies.

Questions for Discussion

• 1. In this narrative, Mr. Charles Pollard and Mr. Herman Shaw are metaphors for other men in the Study. What did Mr. Pollard and Mr. Shaw reveal in this narrative that shows they was not alone in their story?

• 2. Care ethics is relational, but can it work to undergird public health ethics? How does care factor into what is revealed about the doctors’ attitudes?

• 3. If Mr. Pollard and Mr. Shaw’s testimonies are persuasive, what do they persuade you to consider about public health ethics that you’ve not previously considered?

• 4. Name the public health violations you identify in Mr. Pollard and Mr. Shaw’s narrative; then explain how they are ethical violations.

• 5. What are some of the modern public health policies derived from Mr. Pollard and Mr. Shaw’s testimony and the SyphilisStudy?

• 6. Imagine you had access to the public health ethics policies of the twenty-first century, but you were living in the early twentieth century, how would things have been different?

• 7. How is care ethics present in this narrative? At what juncture is care present or absent?