A cultural anthropologist offers a counter-narrative to the infamous story of US government scientists allowing black men to suffer from untreated syphilis.
It is said of Thucydides, the great ancient Greek historian, that his recording of human events during the Peloponnesian War is ‘marked by accuracy and a studied impartiality’.
Some of the intellectual virtues we associate with a Thucydides, or with a Socrates (a principled commitment to explore the other side) are at risk of being sacrificed in our contemporary public policy forums. All too often these days one witnesses the triumph of identity politics over critical reason. All too often a rhetoric of evil and moral horror demanding protective public interventions has produced a rush to judgement about matters of great consequence.
One such case, in which sensational and consequential declarations have been made without the benefit of robust impartial debate, relates to ‘The ‘Tuskegee Study of untreated syphilis in the Negro male’. The ‘Tuskegee Study’ was conducted in Macon County, Alabama between 1932 and 1972, and is often associated with the image of monstrous government researchers allowing black patients to suffer from a curable and devastating infection (syphilis), so as to document the natural course of the disease.
The study, which was conducted openly and without secrecy, is now commonly and routinely portrayed in one or more of the following ways: as racist science; as ‘a programme of controlled genocide’ (whites against blacks); as a violation of basic human rights; as a study by the US government’s Public Health Service in which effective treatment for a fatal disease was withheld from a poor, uneducated, vulnerable minority group in disregard of their health and safety; as a callous scientific pursuit that ignored human values and was ‘almost beyond belief and human compassion’; as ‘an outrage to our commitment to integrity and equality for all our citizens’; as a research project in which the government gave syphilis to black people so as to scientifically document the natural course of the illness; as an ‘experiment’ in which human beings were treated like guinea pigs or laboratory rats.
The study is also often cited as a compelling example of why we need the Institutional Review Board (IRB) system of ethical surveillance and control for research with human subjects – a system that is now applied by most US universities to all research with human beings, regardless of funding source (public, private or personal) and research topic (medical or non-medical). Indeed, it was a New York Times article by Jean Heller on 26 July 1972, provocatively titled ‘Syphilis Victims in U.S. Study Went Untreated for 40 Years’, and subsequent Congressional hearings held in the post-1968 civil rights era (precipitated in part by media representations of the Tuskegee study), that resulted in the legislation that first mandated IRB review for all government-funded research.
My own interest in learning more about the Tuskegee syphilis study began with a dinner conversation with a friend, who is a doctor. Earlier that day I had received a communication from the head of an IRB committee indicating that ‘Tuskegee’ was reason enough to have all research questions and procedures at the University of Chicago screened and approved by an IRB. Although I knew relatively little about the details of the Tuskegee Study, I had somehow acquired the impression that many decades ago during the days of unregulated medical science the US Public Health Service had actually infected black men with syphilis. This is a not uncommon belief among black and white Americans who have heard of ‘Tuskegee’.
But my friend told me: ‘Nobody was given syphilis in the study.’ All the participants (black sharecroppers in Macon County, Alabama in 1932) already had syphilis, ‘but they were not treated for the disease’. I then asked him how syphilis was treated in 1932 when the study started. ‘There were some horrible, painful, expensive long-term treatments around but I don’t think they really worked’, he said – ‘there was no effective therapy at the time’. ‘Had there been an IRB system in place in 1932, applying the medical research norms of those times, would the IRB have approved the project?’, I asked. ‘I am not sure, but they might have’, he said. I began to suspect that there was both less and more to ‘Tuskegee’ and the political role it now plays in popular consciousness than has met the public eye.
So I began to read the now standard literature on the topic, as well as some of the scientific reports by members of the Tuskegee project, a sociological study of Macon County conducted in the early 1930s, and websites of various kinds (1). Eventually I discovered a Thucydides-like historical account of the medical belief system that informed the research (2). And the more I read, the more suspicious I became about the standard horror-story.
Accusations of racism, egregious harm and betrayal (lack of informed consent) are common features of the horror-story account. A sober representation in this genre might state that the Tuskegee syphilis study was ‘a US Public Health Service experiment that allowed 400 black males of Tuskegee to go unknowingly without syphilis medication for 40 years simply to satisfy the medical profession’s curiosity about what happens to people when they aren’t cured of venereal disease’ (3).
The implication of that statement, of course, is that the syphilis infections of the residents of Macon County in 1932 could have been cured, yet vulnerable black men were kept ignorant of their condition and left to suffer because of the racist attitudes at the Public Health Service – and that all this was done in the name of callous science by researchers who had no real interest in the public good or the welfare of members of a poor minority group in the South.
The first research publication that I found from the study itself states: ‘The original study population selected during the winter months of 1931-32 and 1932-33 consisted of 410 syphilitics, all of whom were 25 years of age or older. The presence or absence of syphilitic infection was based on history, physical examination, and qualitative serologic tests on the blood. Of the syphilitic groups, 178 were given some treatment for their infection during the period of this first examination. Most of these individuals were among the younger age groups, and were given amounts of treatment varying from 1 to 15 injections of neoarsphenamine [the most common arsenical drug of the times]. Patients who were given treatment were dropped from consideration in the present paper. A second complete physical examination was performed in 1938-39 when 140 untreated syphilitics and 156 controls were examined.’ (4)
So the plot thickened. Not everyone went without attempted therapy. The Tuskegee study was meant to be a study of men with later stage latent syphilis, who had been infected for at least five years and were not contagious. One Tuskegee research report states: ‘The patients [in the study] who had syphilis were all in the latent stage: any acute cases requiring treatment were carefully screened out for standard therapy.’ (5) It would appear that those who were in the early stages of infection were treated. It is only in the early stages of infection that sores appear; those sores disappear with the passage of time. It is also only during the early stages that the disease is contagious, which is also when the therapies of the 1930s were ideally administered and thought to have their greatest effect.
I also learned that the therapies of that era were in fact so weak, hazardous, lengthy, costly and difficult to administer that very few people with syphilis were willing to tolerate the drugs for the full course of the treatment. Most patients (perhaps 85 per cent) simply voted with their feet and gave up on the ‘therapy’. Of those who did suffer through the full treatment (it could take more than a year and required carefully monitored intravenous administration of the drug) relatively few patients were ever cured of the syphilis infection or protected against its potentially damaging effects because of those therapies.
Indeed, one of the most astonishing facts about the disease (at least to those of us who are not medical scientists, or who naively associate syphilis with the demise and devastation of Frederick Nietzsche) is that, after the early stages of infection, the vast majority of people who have untreated syphilis either remain asymptomatic all of their lives or else spontaneously recover from the disease. For most people, a syphilis infection is either a self-limiting or self-correcting disease, and in the 1930s the degree to which doing something (a year of protoplasmic arsenic poisoning) was better than doing nothing at all was at the very least uncertain, and was thus a matter of urgent medical and scientific concern (2).
I also learned that the study emerged out of a liberal progressive public health movement concerned about the health and wellbeing of the African-American population. The study was done with the full knowledge, endorsement and participation of African-American medical professionals, hospitals and research institutes. I learned that in Macon County in the early 1930s there was somewhere between about a 20 and 36 per cent infection rate for syphilis. I learned that the general mortality rate for the local white population of Macon County at that time was the same as the mortality rate for blacks (6). I learned that Eunice Rivers, an African-American nurse, whose voice seems informed, authoritative, and compassionate, was the key personnel for the project for nearly 40 years, and remained unwavering in her support for the study, even after it was labeled racist science and a program of controlled genocide. All this made me wonder whether perhaps the true meaning of ‘Tuskegee’ is more morally complex than I had supposed. While the physical context of the study was a segregated and racist South, this did not mean that the study itself was racist.
But most importantly I learned that there is a plausible counter-narrative about the Tuskegee study that has received rather little press coverage, has not entered public consciousness (although it can be found in some academic writings) (7) and, perhaps because it does not fit with the discourse of horror, has not figured in the official literature seeking to justify the post-Tuskegee evolution of the IRB system of research regulation. Whether this counter-narrative can survive open debate and responsible, impartial cross-examination remains to be seen, but it is a story that is plausible enough to deserve a more public hearing (8).
As I interpret it, there are three main themes in the counter-narrative. The first is that circa 1932 a reasonable, fully informed public health researcher who cared about the welfare of all human beings – black and white – might well have supported the Tuskegee syphilis study. The possible reasons for such support have been outlined by Benedek and Erlan (2): ‘1. syphilis was recognized to be a major public health problem; 2. it was most prevalent in the black population; 3. there was disagreement about its optimal treatment; 4. all treatment programs, were lengthy, painful and potentially toxic, with a very poor completion rate; 5. a large proportion of the syphilitic population obtained no relevant treatment; 6. according to one retrospective study [an earlier analysis of medical records on an untreated white Scandinavian population], the disease resolved spontaneously in a majority of cases.’ (p18-19)
The first theme of the counter-narrative suggests that a reasonable person in those circumstances might conclude that participation in the study did not involve a substantial increase in risk to the health of the men involved, and might produce some useful knowledge.
Here is how Benedek and Erlen (2) describe the medical belief and knowledge system of that pre-penicillin era. They suggest that in 1930 there was an urgent sense of the need for more rapidly acting and safer drugs for treating syphilis. They quote the surgeon-general (in 1938) who reports: ‘[S]yphilology of 1925 was a chaos of different regimes of treatment, of different dosages, of private preferences for different variations of the arsenical compounds. There were many piecemeal case studies but no accurate data upon which the scientist could judge the relative efficacy of these methods.’ (p7) They point out that between 1932 and 1946 the conclusion was reached by several investigators that ‘treatment improves the eventual course of syphilis in only a minority of cases’ (p13). They write: ‘However, all of the anti-syphilitic drugs of the 1930s were rather weak, and no dramatically more potent drugs were anticipated. Therefore, particularly detailed knowledge of the range of variability of the therapeutically unaltered course of the disease would be desirable to determine as early as possible whether a new treatment significantly altered its course.’ (p22-23).
Benedek and Erlen present evidence showing the weakness of the 1930s drugs (people receiving little or no treatment did almost as well as those going through a long, expensive, painful and risky treatment). They point out that a major medical and scientific issue at the time was the need for a baseline against which to evaluate the effectiveness of any therapy (all of which were known to be hazardous and therapeutically weak). They suggest that at that time ‘knowledge of the chronic course of syphilis was inadequate to reliably distinguish therapeutic effect after the initial phases of the disease from the variability of its chronic course’ (p2). In other words, the disease was self-limiting or self-correcting in most cases – yet no one knew for which smaller sub-population of patients that was not true or how they could be identified. In addition, it was hard to tell whether arsenical poisoning or any other therapy administered during the early stages of infection, really had a sufficiently beneficial long-term effect.
Thus, the point of the first theme in the counter-narrative is that the Tuskegee Study had a credible medical rationale; it is possible to understand the study simply as a potentially beneficial public health project. In other words, in 1932 one could be a liberal and a progressive and still consistently support the Tuskegee Study; involvement in the project was not necessarily an index of bigotry or racism.
The second theme of the counter-narrative, is that we should not presume that the life-course morbidity and mortality profiles of the Tuskegee men were significantly influenced for the worse by participation in the study. Between 1932 and the time penicillin was standardised, readily available and medically approved as a cure for syphilitic infections (which was well into the 1950s), the treatments of the day were weak and ineffective.
By the time penicillin was available the men in the study had been infected for at least 20 years, and in most cases for much longer. A minority had died, some from complications (cardiovascular diseases) caused by syphilis, but this had occurred before an effective therapy was available. For a large number of the rest, by the 1950s their original infection would have been self-limiting or self-correcting. Of those many men who were still alive in the 1950s and 1960s it remains unclear whether penicillin treatment for late latent syphilis would have had any effect on their life expectancy or health profiles. If the syphilis infection was going to damage their heart value or some other biological system, it would in all likelihood have done so long before the 1950s, and penicillin could not reverse that damage. Some forms of inflammation, if still caused by the infection, would presumably have been curable, but there is evidence that as the remarkable men from Tuskegee got older their life expectancy compared quite favourably with men from Macon County who were never infected.
So the second theme of the counter-narrative suggests that the sense of horror and moral opprobrium now associated with the Tuskegee Study is based in some measure on a misunderstanding of basic facts about syphilis (the disease is more frequently self-correcting or self-limiting and asymptomatic than most people imagine) – as well as misunderstanding about the nature and potential efficacy of the various ‘cures’ or treatments available during the 40 years of the study.
A direct test of the egregious harm accusation against the PHS and the Tuskegee Study seems possible. If the counter-narrative is correct, and little harm came as a result of participation in the study, then the men who did participate in the study should be no shorter lived or less healthy than comparable men from Macon County who were infected with syphilis in 1932 but did not participate in the study. If the drug treatments of the 1930s were more or less therapeutically useless and penicillin arrived too late really to be helpful for this particular group of long infected men, then men from Macon County who were infected with syphilis in 1932 and received treatments of arsphenamines in the 1930s and/or penicillin in the 1950s should be no longer lived and no healthier than the men who participated in the study. One hopes that the data to perform such a test are still available and that such a test might be made.
The third theme in the counter-narrative is a caution against hindsight moralising and the temptations of ‘presentism’ (the inclination to react to past actions as though they were occurring in the present and to judge them on the basis of the standards of our day). Contemporary critics of the Tuskegee Study and advocates for racial justice accuse the PHS researchers of having ‘withheld treatment’ from the Tuskegee men. If one takes to heart the caution against ‘presentism’ then one might reasonably judge that accusation to be both misleading and unfair. Putting aside the issue of whether the ‘cures’ of that era were really effective, the accusation of having ‘withheld treatment’ presupposes that the administration of an adequate early 1930s arsenical therapy regime was actually a live option.
It is a fine and debatable hypothetical to wonder if a year-long legally mandated and enforced program of arsenical therapy for all infected adults in rural Alabama in 1932 would have promoted the general welfare (the counter-narrative says, not necessarily so), but whatever one’s answer to that hypothetical, it was not a viable option. It is not just that public health funding and resources were meagre in the midst of the Great Depression, although one should not minimise that very real limitation on resources at that time. Just as relevant is the fact that public health workers and PHS medical scientists associated with the Tuskegee Study were in no position to safely, humanely and systematically respond to syphilis infections in rural Alabama, in the way that would have been required by the medical standards of the day.
As noted earlier, if left to their personal decision-making even patients who initially eagerly sought out treatment would probably sooner or later choose to terminate the treatment regime, prior to the point recommended for ‘adequate therapy’. In assessing whether a large-scale treatment program was an option, the characteristics of the local scene are relevant – and it is not race that is the central issue (and not racist assumptions, either). Imagine designing the type of treatment program that would have been necessary: the monitoring, policing and control systems that would have to be put in place; the intrusions into private and family lives of the county’s men and women. Work out the risks, the costs, the likely resistance, and the morality!
One year of intravenous treatment requiring close monitoring and surveillance, with very expensive drugs that produce bad side-effects, and with a population that is spread out in rural Alabama and was likely (based on past reactions by both white people and black people) to withdraw from treatment in overwhelming numbers. Even a progressive and liberal person might reasonably conclude that in 1932 there was no practical or realistic way to offer a treatment regime that would have had a prayer of being successful, even if one believed that the drugs, if taken for a long period of time, were effective for some unpredictable minority of the men. In the context of their times and situation, the counter-narrative suggests that the Tuskegee researchers did not ‘withhold treatment’ because providing ‘adequate treatment’ was not a live option; long-term treatment with arsphenamines was not in the cards.
According to the counter-narrative, the only real option available was this one: do the study or don’t do the study. And it isn’t hard to imagine that the Tuskegee research team reasoned that if the study was done the study subjects would at least be no worse off then if the study was not done; and that doing the study was better than not doing it, because of the possibility that baseline information about the natural course of the disease would facilitate the development of new and more effective treatments. We can look back and regret the state of public health and public health funding in Alabama at the time (that is why the liberal progressives of that era got involved in the first place), but we can’t blame those progressive public health workers for those dreadful conditions or imagine that support for the study required endorsement of the racist assumptions that were undoubtedly held by many Americans at the time.
Hindsight moralising also deeply affects our evaluation of the lack of full disclosure and informed consent in the study. The Tuskegee men were not told they were in a research study. No one explained to them the medical conception of syphilis or the connection between sexual behaviour and their disease. No one explained to them the scientific and practical gains that might come from knowing more about the self-limiting and self-correcting nature of syphilis so as to be able to evaluate the power of early therapeutic interventions. They were led to believe they were being tested and getting treatment for their ‘bad blood’ (a local idiom for identifying and naming the illness symptoms associated with syphilis). They knew they had ‘bad blood’ and that the PHS was testing them for it and keeping records on their health condition.
The third theme in the counter-narrative invites us to generalise this type of doctor/patient relationship and view it as characteristic of the times. It seems to me that the plausibility (or lack of plausibility) of this part of the counter-narrative turns on two claims. The first claim is that in 1932 the concept of informed consent had not even been imagined by medical professionals, almost all of whom, if has been argued, deeply believed in the Hippocratic ‘tradition of paternalistic secrecy in the doctor/patient relationship’ (2). Benedek and Erlen also remark that ‘there were no generally accepted ideas before WW II about what information physicians were obliged to give their patients’ (p24). The implication is that doctors in the 1930s often did not disclose information to their patients and frequently deceived them, not necessarily because of evil motives or because they were engaged in acts of betrayal, but (as maddening as it may seem by current American standards) because they kept their paternalistic eyes fixed on some imagined greater good.
The second claim to assess is: How paternalistic in the good sense of the word (a person in authority who cares about the general wellbeing and best interests of those who are not in a position to fully care for themselves) was the decision to conduct a prospective observational no-treatment study of syphilis in Macon Country in 1932? Was there some greater good that might result from the research? Or was the research fundamentally incompatible with the interests of the infected men? As noted above, the counter-narrative says ‘yes’ to the first question – one can imagine the greater good that these medical researchers paternalistically had in view. But what about the second question – was the research fundamentally incompatible with the interests of the infected men? Had there been full disclosure, would the Tuskegee research project have been able to go forward? Would they have been able to recruit volunteers?
What would full disclosure and voluntary participation based on informed consent have meant in this case? A prospective subject would have been a male who had contracted the infection at least five years earlier and thus was not contagious and would be free of sores (and probably free of symptoms) at the time of making the decision. Minimally he would be told that he had ‘bad blood’; he would be told what caused it and he would be told the range of possible outcomes of the infection over a lifetime. He would be informed that prior research had shown that in most cases the disease takes care of itself or even goes away, and that the likelihood of having no symptoms over a lifetime is pretty high (70 per cent or more). He would be told that for an unpredictable minority of men the infection causes damage to the heart or nervous system, and that in those cases there is risk of death. He would be given a detailed description of what it would be like to go through one year of treatment with arsenical drugs, including the undesirable physical, emotional and social side-effects of the treatment (pain, convulsions, risks of death, confinement, isolation away from home in a hospital setting), and their impact on his way of life during that year.
He would also be informed of the fact that at best a small minority of people can expect to be helped by the drugs in the long run. He would be told the rationale for the study. He would be given a description of the potential benefits for future drug development, and told that it was the hope of those associated with the project that one day these results might have a positive effect on the welfare of men and women in Macon County (remember it is 1932 not 1992, and members of Booker T Washington’s local Tuskegee Institute endorsed and participated in the study). And he would be offered various reasonable incentives for participation: free physical exams and some medications for ailments other than syphilis, transportation and regular care provided by Eunice Rivers, membership in the Eunice Rivers Lodge, and better access to health services than was generally available to the residents of Macon Country at the time.
I do not think it is far-fetched to believe that, after full disclosure, 400 men with a syphilis infection in Macon County in 1932 might have volunteered for the study. Understandably (and predictably) contemporary critics object that no patient should ever be deceived, and they invoke up-to-date ideals and interpretations of informed consent, patient autonomy and medical beneficence, thereby opening the door to all the hazards of ‘presentism’. But if this hypothetical proved to be true, on what grounds would a critic claim that a prospective observational no-treatment study should never have been contemplated or designed?
There are, of course, many other questions one would like answered about ‘Tuskegee’. For example, given that all of the men in the study were in the latency stage and many (perhaps most) were asymptomatic (at least with respect to their syphilis infection), why did they go back every few years for a medical check up and interview? (The main points or dates of diagnostic and ‘treatment’ contact with the study were few, intermittent and far-between – 1932, 1938, 1948, 1952, 1963. Although apparently there was also some interaction – how much is unclear and probably varied from person to person – with the local county health department, and also fairly regular contact with Eunice Rivers, the local public health service nurse (5).) Did the men go in for those physical exams and survey sessions because they had access to a doctor to talk about medical complaints? Was it because they liked and did not want to disappoint the amazing Eunice Rivers, the African-American nurse who had become part of their lives, treated them with respect and concern, and remained close to them for nearly 40 years? Was it because they had a sense of solidarity with each other and had become members of the Eunice Rivers Lodge, which was one of the many burial/social societies that were cultural institutions in Macon County at that time? Were there social benefits, or even health benefits, associated with such participation?
And what treatment did they actually think they were getting from these doctors, who they saw intermittently, and who gave them a physical exam and asked some questions about their health? (The highly sensationalised spinal tap was a one-time ‘treatment’ measure, and was dropped after the first visit because of strong patient resistance.) What, in fact, were the fake therapies given to them that would have led them to assume they had adequate care? It seems likely that the existence of arsenical drugs (and their side-effects) would have been known or talked about in the local community because so many young men (178 of them) had received neoarsphenamine treatment for their acute infections between 1931 and 1933. Would not the men in the study have realised that they were not receiving such treatment?
Although the interpretation of facts is never transparent, of the 90 men from the original sample of infected men who were examined in 1963, 96 per cent had received some form of either arsenical or penicillin treatment from other sources (2); perhaps suggesting that they were not completely duped by, or under the control of, the PHS, and not entirely ignorant of their infection. Indeed, why should we so readily accept as plausible the somewhat patronising image of black men in Alabama as so ignorant and innocent that for 40 years they had no idea that the symptoms of ‘bad blood’ were related to syphilis, and were easily duped into thinking they were getting fully adequate treatment from occasional contact with some government physician, who saw them on a schedule that was entirely unrelated to the development of any of their medical complaints?
Other questions arise. What were the local community standards for talking about sex in 1932? Would men have come forward if they were told that the study was looking for people who had a sexually transmitted disease? And why precisely did the personnel and field workers in the study – black and white – decide not to explicitly tell the study participants that they were infected with a sexually transmitted disease? Would the men have wanted to know? Would they have been stigmatized?
And then, of course, there are questions about what rightly should have been done between 1955 and 1960 when penicillin was standardised, available and known to be efficacious in eliminating the bacterial infection associated with syphilis. In the late 1950s no one at PHS went out of their way to tell the men about a new and effective drug, nor was the study terminated and penicillin therapy recommended. Many have judged this to be a very serious transgression of the doctor/patient relationship, and suggested that the PHS researchers were far more interested in seeing the future results of their study than in taking care of the health of the Tuskegee men.
There is no doubt that the researchers were interested in the knowledge that might result from the study; but did they in fact sacrifice the health of the men for the sake of their study, or withhold medical care in disregard of their professional obligation to alleviate human suffering? According to the counter-narrative, by the late 1950s the PHS researchers would have certainly known that penicillin was effective at reducing or eliminating a syphilis infection – but they would have also (correctly) believed that the removal of a 20-plus-year-long (and by then largely self-limiting, self-correcting or asymptomatic) infection would make little difference for the health and life expectancy of the men in the study.
I am not sure what the counter-narrative itself has to say about whether they should have been offered penicillin anyway, or whether the failure to do so should be viewed as a clear violation of the medical ethics of the time. One would like to know: circa 1960, were the PHS medical researchers at professional liberty to withhold information about potential medical treatments based on their own utilitarian assessment of the negligible probable benefits of the drug for men who had survived such a long-term infection, and of the potential usefulness of the knowledge that might result from their research? Would their assessment of the relative benefits have been the same if the participants in the study had been their friends or their relatives? What if, consistent with the moral logic that every person’s welfare should be weighted equally, the PHS researchers would have made exactly the same utilitarian assessment, regardless who was in the study? Were they, circa 1960, at professional liberty to make that assessment and not offer penicillin to the men in the study? Or, were they in clear violation of the medical ethics of their time?
Surely had the PHS researchers lived up to our current understandings of the moral obligations of medical professionals, they would have contacted the men in the study and truthfully told them what they knew and believed: that they had a syphilis infection, that taking penicillin would most likely get rid of the infection, but that penicillin therapy at this stage in their life would probably have no bearing on their morbidity or mortality. In other words, they would have presented the men of Macon County with the choice to drop out of the study and take penicillin, or alternatively, to decline the drug and continue in the study (for the sake of what might be learned). Because the PHS researchers offered the men of Macon County no such choice they have been condemned of an ethical failure.
Nevertheless, even if one knew for sure that the medical ethics of the late 1950s would have required the PHS researchers at least to offer penicillin as a treatment option, a full and fair consideration of the counter-narrative still invites the following question. If it was truly the case that the taking of penicillin in the late 1950s would have made little difference for the physical wellbeing of the men (and, on the basis of solid research, we all really believed that), would Tuskegee loom so large in popular consciousness, in the halls of Congress or in the literature justifying the process of IRB review? What if the prediction made in the counter-narrative is correct – that the men in the Tuskegee Study who were alive in the 1950s will turn out to be just as long-lived and healthy as other men from Macon County who acquired a syphilis infection in the late 1920s and then (30 years later) were treated with penicillin in the late 1950s? Should that make a difference for the moral lessons that are drawn when we reflect on the meaning of Tuskegee? Would it make a difference? If not, why not?
In this essay I am neither endorsing nor dismissing the counter-narrative, but rather spelling it out and suggesting why it is plausible enough to warrant more public attention. It remains to be seen whether an impartial assessment of the evidence (and future research) will continue to lend support to the popular contemporary horror-story version of Tuskegee; or whether, alternatively, one will come to the conclusion that the Tuskegee project was neither racist nor in and of itself the cause of great harms. Perhaps the horror story will have to be revised and toned down because it has been too heavily influenced by post-1968 identity politics. Perhaps not – that remains to be seen.
Racial justice matters, and social justice in general is a central value in our liberal democracy. But one must also remain open to the possibility that in this instance politics and generalised racial grievance have got in the way of critical analysis. That too remains to be seen, and debated. At the very least, the evidence suggests to me that in this instance the ‘received wisdom’ of the day deserves to be re-examined. One hopes for a renewed, critical and balanced public discussion of the meaning of ‘Tuskegee’, the type of discussion that might heal wounds rather than reopen them. Not just because the world is often more morally complex than imagined; but also because collective reason (and reasoning together) also matters in the construction of those of our historical narratives that invite us to reflect on the moral foundations of our own society.
Richard A Shweder is a cultural anthropologist, Carnegie Scholar and the William Claude Reavis Distinguished Service Professor in the Committee on Human Development at the University of Chicago.
This essay draws on, revises and substantially extends one section of his George Kneller Lecture (‘The Idea of Moral Progress: Bush v Posner v Berlin’), which was delivered at the Philosophy of Education Meetings, Miami, Florida, March 28, 2003.
(1) Jones, J. (1993) Bad Blood: The Tuskegee Syphilis Experiment. Free Press: New York; Reverby, S.M. (2000) Tuskegee’s Truths: Rethinking the Tuskegee Syphilis Study University of North Carolina Press: Chapel Hill, N.C.; Pesare, P.J. et al. (1950), ‘Untreated Syphilis in the Male Negro: Observations of Abnormalities Over Sixteen Years’, American Journal of Syphilis, Gonorrhea, and Venereal Diseases, 34:210-213; Johnson, C.S. (1934), Shadow of the Plantation, University of Chicago Press: Chicago
(2) Benedek, T.G. and Erlen, J. (1999) ‘The Scientific Environment of the Tuskegee Study of Syphilis’, 1920-1960, Perspectives in Biology and Medicine, 43:1-31
(3) Cramer, J.J. (1979), ‘The $10-Million Dollar Giveaway’, The American Lawyer, October 1979, pages 22-24
(4) Pesare, P.J. et al. (1950), ‘Untreated Syphilis in the Male Negro: Observations of Abnormalities Over Sixteen Years’, American Journal of Syphilis, Gonorrhea, and Venereal Diseases, 34:210-213
(5) Rivers, E., Schuman, S.H., Simpson, L., and Olansky, S. (1953), ‘Twenty Years of Followup Experience in a Long Range Medical Study’, Public Health Report 68:391-395. Reprinted in Reverby, S.M. (2000), Tuskegee’s Truths University of North Carolina Press: Chapel Hill, N.C.
(6) Johnson, C.S. (1934), Shadow of the Plantation, University of Chicago Press: Chicago
(7) See for example, Benedek, T. (1978), ‘The ‘Tuskegee Study’ of Syphilis: Analysis of Moral versus Methodological Aspects’, Journal of Chronic Diseases 31:35-50. Kampmeier, R.H. (1972); ‘The Tuskegee Study of Untreated Syphilis’, Southern Medical Journal 65:1247-1251; Rivers, E., Schuman, S.H., Simpson, L. and Olansky, S. (1953), ‘Twenty Years of Followup Experience in a Long Range Medical Study’, Public Health Report 68:391-395. All Reprinted in Reverby, S.M. (2000), Tuskegee’s Truths, University of North Carolina Press: Chapel Hill, N.C.
(8) In educating myself about the Tuskegee Syphilis Study I have benefited greatly from communications with Allan Brandt (Harvard University), Jonathan Cole (Columbia University), John Lantos (University of Chicago) and William Meadow (University of Chicago). Needless to say they each have their own views about Tuskegee, and Allan Brandt is not only a critic of the counter-narrative but might well be my nominee to brilliantly debate the issue in any public hearing. For Brandt’s perspective see ‘Racism and Research: The Case of the Tuskegee Syphilis Experiment’, The Hastings Center Report (1978) 8:21-29. Reprinted in Reverby, S.M., (2000) Tuskegee’s Truths, University of North Carolina Press: Chapel Hill, NC
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