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Susan M. Reverby
May 18, 2022
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May 2022 marked 25 years since President Bill Clinton’s federal apology for the US Public Health Service (PHS) Study of Untreated Syphilis in the Male Negro, better known as the Tuskegee Study, and this July marks the 50th anniversary of the Study’s widespread public exposure. Over the decades, the Study has become the symbol of American immoral research practices, racism in medicine, and the push that led to the 1979 Belmont Report and principles for ethical research in human subjects. In these COVID years, it is the reason often given for the mistrust of the health care system among African Americans. Histories, movies, plays, poems, music, thousands of articles, and endless rumors and social media accounts keep the Study’s story, fictional and nonfictional, circulating.1 Yet there is still more to learn and uncover as we plumb the historical record and ask contemporary questions. One of these concerns is why the Milbank Memorial Fund acceded to the PHS’s request for money in 1935 to support the Study and continued it for the next nearly four decades.
In May 2021, the Milbank Memorial Fund asked me, as a medical historian who had written on what happened in Tuskegee, to research a series of questions of how and why the Fund became involved, what they did during the Study’s years, and then its aftermath. My work resulted in a long report now on the Fund’s website that uncovered new information on how the Study was sustained.2 My findings provide more insight into the Study’s longevity, why it was not stopped, and the nature of the government and philanthropic foundation relationship. This article is a short summary of my findings that can serve as an example of history as part of restorative justice, as the Fund now considers its moral obligations to the descendants of the men in the Study.
The basic facts of the Study are well known and taught, albeit often in truncated forms as preparation for researchers doing ethical human subjects’ studies, as part of history of medicine courses, or in media stories. PHS physicians and health care providers from the historically Black Tuskegee Institute (now University) recruited 624 African American men, 427 with late-stage syphilis (the noncontagious last of the illness’ three stages), and 197 without the disease as the Study’s control arm. Not all the men, however, proved to be in the disease’s noncontagious third stage, and there appeared to have been little or no care taken to see if the men had already infected their sexual partners. Despite endless rumors, the men were never given the disease by the PHS. The Study’s purpose was to keep the men from treatment, although not always successfully, as the course of the disease was followed to see if drugs to cure syphilis were really needed. This continued after penicillin for syphilis became widely available in the early 1950s. The PHS knew it would never be able to recreate their “data set,” and they continued not to see the men as individuals with varying medical needs.
Medical wisdom at the time assumed the disease was different by racial categories, with African Americans presumed to get cardiovascular complications and whites the neurological ones.3 There was no informed consent, nor was it required, and the men were misled and told the aspirins, tonics, and vitamins handed out, as well as the diagnostic spinal taps, were treatment for the colloquialism known as “bad blood.”4 Bureaucratic scientific inertia, the desire to study the widespread disease, and the necessity for treatment in its later stages intertwined with racism are the usual explanations of why it kept going year after year.5 The Study, never a secret, went on for 40 years between 1932 and 1972 in and around Tuskegee, in Macon County, Alabama, as more than a dozen research reports were written about its findings.
The PHS physicians who ran the Study did not have to prepare a protocol, but shared their expectations and procedures with noted cardiologists and syphilologists. At the beginning of the research, these specialists told the PHS that without autopsies their clinical observations, examinations, and x-rays were not enough to prove, in particular, the cardiovascular damage the disease could do. Under Alabama law, a signed consent from the family was necessary for a post-mortem even when no informed consent was required for the research project.6
When the first autopsy was obtained, the family of the deceased asked for some payment as compensation for their consent.5 The PHS doctors seized upon the idea of providing the families with what they called “burial insurance” as an inducement for the autopsies for the mostly poor sharecroppers and farmers recruited as the Study began at the height of the Great Depression. Since the PHS could not pay individuals under its budget, it first turned to the Chicago-based Rosenwald Fund to underwrite this cost because Rosenwald had previously funded a treatment syphilis study in the South that had included Macon County. When that foundation turned down the PHS as they limited their health care grants, the PHS went to New York’s Milbank Memorial Fund. While focused primarily on public health, not medical research, the Fund had given grants for syphilis, and other diseases, when the link to public health was clear. They agreed to step in. From 1935 until the end of the Study, the Fund, once notified that an autopsy had been done, sent checks to the Tuskegee Institute to be distributed to the undertakers, the nurse and doctors who did the necropsy, the hospital where it was performed, and sometimes to the families too. Over the years the Fund would send $20,150 to Tuskegee for 234 autopsies out of the 428 men who died before 1972. 2
Historians, myself included, have argued that these funds for “burial insurance” kept the families tied to the Study and underlay its racism, although none of us noted that this enticement worked for only 234 of the 624 men in the Study as a whole, or less than 40%, and for only slightly more than 50% of the men who died before 1972 .4, 5,6 This focus on the inducements failed to consider how important the “science” of autopsy was to the PHS, and thus the continuation of the Study for the researchers themselves. Surgeon General Hugh Cumming made this clear in his long letter to the Fund in November 1935 when he urged them to continue the grant that had begun the previous May. He reiterated the PHS’s position that “it was early appreciated that the study was open to the objection that all of the evidence was based upon clinical observation. Measures were therefore instituted to bring the individuals included in the study to autopsy in the event of death.” And as he concluded: “An opportunity of this kind is not presented in many places in the civilized world today. For this reason it is urged that the Milbank Memorial Fund continue to support this study….” 7
At the time, most of the syphilis research was being done in the clinics of leading medical schools. When the PHS wanted its officers/physicians to get specialty training, they often sent them to places like Johns Hopkins to be mentored. For the hospital-based specialists, autopsies were “an indispensable research tool, an unrivalled teaching exercise, and an important check on clinical diagnosis.”8 Trying to prove themselves as excellent scientists to these hospital-based specialists, the PHS researchers wanted good autopsies, with well-preserved organs and tissues. They spent much time detailing to the Tuskegee-based physicians and nurse how the post-mortems should be done and the materials preserved, even when finding the ice to pack the specimens could sometimes prove challenging before they were sent on to the government pathologists for further analysis. 2
The reasons why the Milbank Memorial Fund was willing to do this were different from the motives of the PHS. By 1935 the Fund was 30 years old and had become a major foundation providing grants for demonstration projects, public health outreach, and research into the political economy of health care financing.9 Coming out of the efficiency movement and public health concerns of the Progressive Era, the Fund’s leadership had long-standing connections to powerful public health leaders, many of whom sat on the Fund’s Technical or Advisory boards, or with social welfare activists who had high positions in the Roosevelt Administration.10 Their grantmaking came in the midst of 20th century border disputes between the American Medical Association (AMA), representing private practicing solo physicians fearful of government involvement, and public health advocates focused on what we would now call health disparities, the costs of medical care, and the need for prevention services.11 The Fund officers constantly had to straddle this border between medical care and public health by not infuriating the private doctors’ organizations while trying to increase various public health efforts and to examine the crisis that the expense of medical care was causing among the poor and working classes.12
Despite the Fund’s balancing efforts between private doctors and public health advocates, their executive secretary John Kingsbury became more widely known for his speeches and efforts to get national health insurance into Roosevelt’s Social Security Act and his admiration for the Soviet health care system.13 Angered by Kingsbury’s work and his close ties to Harry Hopkins, President Roosevelt’s federal relief administrator and later Commerce Secretary, the AMA struck back in 1935. Using its considerable political power, the doctor group threatened the Fund that they would tell America’s mothers to boycott Borden’s condensed milk, the company whose board the Fund’s chairman, Albert Milbank, also led, and the source of the wealth of the Milbank family and much of the Fund’s endowment. Borden’s medical director, aligned with the AMA, told the Fund’s leadership that it should put its resources into “medical research,” not agitation for health insurance.14 By then, too, Roosevelt decided it was not worth losing Social Security over the doctor and business pressures to prevent funding for national health insurance.15
Faced with a losing strategy over national health insurance, and the growing demand to make less controversial grants, the Fund’s chairman and board, that had for decades supported both what had been funded and Kingsbury’s work, made two decisions. Kingsbury was fired, and a month later the board agreed to the request from the PHS to fund the “burial insurance” for the Study in Tuskegee.2 In great historical irony, money for “burial insurance” was seen as less politically dangerous, mere medical/public health research.
The nature of the Fund’s relationships, not just the AMA’s pressure and Roosevelt’s failure to push for national health insurance, was crucial to their board’s decision to give the grant to the PHS. In order to stay relevant, the Fund had to cultivate close ties with local, state, and federal public health officials. While it never financed everything a governmental agency (including the PHS) asked for, it looked very seriously at those requests, especially because a number of these officials served on their Technical or Advisory boards and had close relationships to the Fund’s staff. At the national level, the PHS was key because, before 1946 and the creation of what would become the Centers for Disease Control and Prevention, the PHS had served as the primary public health arm of the federal government since 1778, and after 1957, the CDC oversaw the Study. 16
These relationships were reflected on the Fund’s staff and boards. Hugh Cumming, then the Surgeon General, was on the Fund’s Advisory Board and wrote the initial request for the autopsy money in 1935. Thomas Parran, who served on the Fund’s Technical Board for decades, was Secretary of Health for New York State in 1935, and then US Surgeon General (and thus head of the PHS) between 1936 and 1948. Known for his work on syphilis, his book Shadow on the Land: Syphilis helped raise the veil of stigma around the disease and was underwritten by the Fund and positively reviewed in its publication The Milbank Memorial Fund Quarterly.17 Two other Surgeon Generals served on the Fund’s Technical Board, and former Surgeon General Leroy Burney even became the Fund’s Executive Director and President from 1970 to 1977. Burney himself had worked on the Study in the 1930s when he was a young PHS officer. Thus, because the Fund wanted to influence policy to improve public health, various Fund administrators and board members must have believed that granting monies, however small, for the Study mattered in advancing this goal. 2
Year after year the request came in from the PHS, and year after year the Fund agreed to send the money to Tuskegee. Regular reports were sent to the Fund staff and boards on how many autopsies were done and articles published, and PHS and CDC officials met from time to time with Fund staff in New York to tell them of the work. The words “untreated syphilis” appeared in the listing of the funding grants. No one at the Fund objected to what was being done, at least as can be discerned from the extant record. Any concern about the racism, if it existed at all, might have been assuaged by the fact that the checks were written and sent to Tuskegee Institute for disbursement, not to the PHS or CDC. The researchers published 13 articles about the Study in public health and venereal disease journals that the Advisory and Technical Board members would have known about. There was one article that appeared, too, in The Milbank Memorial Fund Quarterly in 1954. No one reviewing or editing it stopped the publication or raised concerns, although by then the men in the Study were called “volunteers,” which might have hidden any concern about informed consent.19 While several physicians and an epidemiologist outside the Fund and the government questioned the Study, the PHS researchers saw nothing wrong and kept it going.4,5 In 1966, after Harvard physician Henry Beecher published a critique of research ethics in clinical trials by leading physicians, there was a presentation to the Technical Board on such problems, and then further discussion on issues of equity and the two-class medical system. However, the Study was never mentioned, nor the Fund’s grants questioned.20
In 1969, after criticism of the Study was made by San Francisco-based sexually transmitted disease contact tracer Peter Buxtun, the CDC called a meeting to discuss whether the Study should be continued. The Fund’s vice president for technical affairs Clyde Kiser attended the meeting. In his report to the Fund after it, Kiser discussed some of the medical/scientific issues surrounding the Study, but he made no mention of the ethical ones.21 The PHS continued the Study, and the Fund kept up its grant.
When the Study became widely known publicly in July 1972 (after Buxtun told the story to a journalist friend and it went out on the AP wire), there was a Senate hearing and a federal investigation. All of this was discussed at the Fund’s October 1972 Board of Directors meeting. The Fund president Leroy Burney told the Board that the federal report was pending and that the Fund had provided “burial expenses,” and sent the checks to the Tuskegee Institute.22 In July 1973, famed civil rights and Alabama-based lawyer Fred Gray filed Pollard vs. U.S. and named the Fund as one of the defendants for its “knowledge or with culpable ignorance” of the lack of informed consent and danger of the non-treatment. The Fund’s liability was dismissed, however, on technical grounds, and Gray focused only on the US government. The case was settled out of court. 23 There was no further discussion by the Fund’s Board of its role. The Fund’s former vice president for technical affairs Clyde Kiser published a history of the Fund in 1975 and made no mention of the Fund’s role in the Study.9
Twenty years later in 1992, two documentary films were made about the Study, one in the United States and another in the United Kingdom. The producer of the US film, developed by Boston’s public television program, Nova, contacted the Fund’s President Daniel M. Fox, who sat on the Nova scientific advisory committee. Fox suggested to the Fund’s board they might want to draft a paper on the current ethical status of the issue. However, the board appears to have deferred to the arguments made by former Harvard medical school dean and former Fund president Robert Ebert about whether penicillin would have made any difference to the men in the latent stages of the disease. Ebert also told the Board, the Fund had not been “…involved in the experiment, only in paying the burial expenses. But [emphasis in notes] we would be misunderstood.” …. Finally, as Alan T. Wenzell, a retired investment banker on the board, concluded: “’Don’t borrow trouble but be prepared with a statement in reserve.’ Just don’t volunteer it.” No paper was written.24
In 1996, a Legacy Committee of historians, health activists, and public health advocates organized with others, including the Black Congressional Caucus, to request a formal federal apology for the Study from President Bill Clinton that happened on May 16, 1997. 25 The Fund was never asked by the committee to apologize, and Fund staff and its board did not know about the apology until it was in the news. Nothing further was done. In 2005, when it was the Fund’s 100th anniversary, the Fund published a centennial report, the Quarterly published an historical article by President Daniel Fox about the Fund in 2006, and several key articles from the Quarterly were reprinted. The Study was not mentioned. 10
For 117 years since 1905, the Milbank Memorial Fund focused on differing ways to use its grants and publications to promote efficiency or (in today’s parlance) evidence-based choices to influence the policy decisions of health care leaders and federal, state, and local government agencies and officials focused on public health. This has been a complex, sometimes fraught, history that led to its involvement in the Study. In its failed efforts to push for national health insurance in President Franklin D. Roosevelt’s Social Security bill in 1935, the Fund found itself in a lop-sided battle against organized medicine’s resistance to such efforts. The Fund pivoted and granted a very small request from the US Surgeon General to provide the “burial insurance” to help obtain the postmortems for the subjects and controls in the Study. At the time, it must have been seen as a noncontroversial form of medical research that had implications for the efficient use of public health funds in the height of the Depression. Blinded by the arguments made by the Surgeon General and reeling in part from the criticism of their seemingly more political efforts at national health insurance, no one on the Milbank board or staff saw anything wrong with this grant.
The monetary award to the PHS was for very little, compared to other Fund grants over the entire course of many decades of funding. Year after year the request came in, and the Fund continued to provide the monies, asking (at least from the archival record) no real questions, even when the opportunities to do so occurred. In an era when written informed consent for research was not required, even if the principle of “do no harm” had existed for a millennium, the lack of a legal requirement or sense of common medical practices mitigated against ethical concerns. When the published papers called the men “volunteers,” it might never had occurred to Fund directors or even the physicians on their Advisory or Technical Boards to be worried about how the research subjects had been recruited. The racism of the Study—who was studied, the assumptions underlying the work, and the failure to treat—never raised hackles on the Fund’s boards nor among most others who read the reports and knew about the Study.
The fact that no questions were asked at the Fund over the decades is critical to understanding why the Fund continued this grant. First, numerous US Surgeon Generals sat on the Fund’s Advisory and Technical Boards, and one even served, after his tour of duty, as the Fund’s president. Second, the Fund needed carefully cultivated relationships to federal, state, and local public health departments to effect the changes and reforms its boards and staff thought necessary. While not every proposal from such agencies was funded, there were political as well as scientific reasons to honor such requests to make sure new policies were implemented. Third, the final decisions on funding were made by the Board of Directors with some advice from the Executive Committee, staff, and the Technical Board. Of the 30 men (and they were all men and I presume white) who served on the Board of Directors between 1935 and 1974, only seven were doctors (three of whom were the executive secretaries or presidents on the staff) and none were syphilis specialists.9 While no medical degree is needed to understand the ethics of the research and to question its underlying racist assumptions, it is possible the lawyers, financiers, charity administrators, and social scientists on the Board of Directors could have been swayed by medical information on why lack of treatment pre-penicillin, and the questionable use of penicillin for the men in the disease’s late latency stage. At the same time, the desire to protect the Fund and not open it up to criticism from the past prevailed. Fourth, that fact that checks were sent to the Tuskegee Institute to distribute may have assuaged any concerns about the racial issues—if there were any—from the Board and staff members. After all, it must have looked as if there was no racism involved since the Institute was a critical part of the Study.
Most historians, including me, have argued implicitly or explicitly that the Milbank money made the autopsies possible because it served as burial insurance and kept the men in the Study. By the end of the Study, however, the PHS had to admit that many of the families did have some form of life insurance and the contribution to their family member’s burial was presumably seen more as just compensation for staying in the Study.26 Historians have used the 1954 Public Health Reports article by Nurse Eunice Rivers, the Tuskegee trained professional who served as the go-between the Study’s men and the PHS and who usually obtained the autopsy permissions. In her article, co-written with other PHS researchers, she claimed only one autopsy refusal, which made it look as though almost every man who had died during the Study up to 1954 had had a post-mortem. 27 Then the same was assumed throughout the remaining Study decades.
This reconsideration at least suggests that the money for the postmortems was less important over time to the families, and actually more important to the PHS/CDC researchers. It made possible their sense that, with the analysis from the autopsies, they were doing good science and would be contributing an unusual and excellent piece of longitudinal research on syphilis that they knew could never be repeated. Perhaps we might consider whether had the Fund stopped the payments at some point over questions, and the PHS could not find any other foundation or organization to take them over, would the Study have continued if the families were no longer receiving any kind of compensation? For without the autopsies, the PHS knew its more observational data would have been questioned by peers.
There is, of course, the issue of the politics of apology and how that changes over time. When the Fund was dropped from the lawsuit in the 1970s, there would have been every reason for it to be quiet about its participation. When the film documentaries that appeared in the early 1990s brought the Study back into popular consciousness, there was the opportunity to participate in a public discussion of why the Fund had participated in the ways it had. Such a public airing, however, never happened. And when the Legacy Committee wrote its report to demand an apology for the Study a few years later, the focus was on persuading President Clinton to do so because it was a federal-sponsored study. Milbank was not included, nor did it take this opportunity to publish or speak out about its role once the apology became public.
While the Fund has had lawyers since its inception, it did not have a crisis management specialist on its staff or board. Since the Tylenol poisoning episode in the fall of 1982, crisis management strategies had evolved to propose that institutions under such duress speak more publicly about their concerns and regrets to get ahead of the damaging publicity. The businessmen and lawyers on the Fund’s board in 1992, however, thought it was prudent to be quiet about the Fund’s role in the Study, especially since there really was no crisis at hand.
Since 1992, other political events made thinking about how to acknowledge the Fund’s role in the Study possible. After the change of the apartheid government in South Africa in the early 1990s, the Truth and Reconciliation processes developed there and in other countries as part of the work of transition from authoritarian and racist regimes to ones based on democratic rule. While some of these processes focused on transitional justice, others tried to consider, as the Canadians did with respect to their First Nations’ people, a form of restorative justice where both sides in a crime meet to repair the harms. Since then it has become more common, although not that often, to have governments apologize for their crimes of the past. For example, when I gave information about a PHS sexually transmitted infections inoculation research program in Guatemala in 1946-1948 to CDC officials in 2010, the formal apology from the Obama Administration to Guatemala happened within six months.2 28
At a time when our country is riven with division, the question of reparations for slavery has again been debated and many colleges and universities are acknowledging the ways in which the enslavement of Africans and African Americans funded their very existence.29 The arguments over the New York Times’ support for its The 1619 Project, that has reexamined the founding of this country and its principles in the light of slavery, demonstrate the hard thinking we need to do to face our past and the resistance that exists to doing so.
It would make sense then, as the Fund moves on in its important work, especially now in the midst of our current COVID/public health crisis, to publicly acknowledge its role in the Study in Tuskegee and to negotiate appropriate reparations with the organization of the descendants of the men in the Study. Apologies of course only cover what happened in the past. What happens next is critical.
This analysis has implications for the Fund as it goes forward. It suggests the Fund might examine who sits on its boards and makes decisions. More diverse voices might help raise questions from differing perspectives, but they are not a guarantee that this will happen, as this history of the Study shows. Perhaps a more careful examination of the ethical concerns in research needs to be part of the Fund’s review process for both articles published in the Quarterly and other actions the Fund supports.
It is also inevitable that the Fund as an institution will want to protect itself. This report suggests ways questions could have been raised, and other decisions made over the last 87 years since 1935 when the Fund became involved with the Study. There are many ways to protect an institution, and it has become increasing clear that silence is often not the most ethical, or even the best, one.
I am hopeful this short article and the longer report become part of our understanding of why and how the Study happened, and the role a foundation played in perpetuating it when it might have been able to stop it. As any good historian can tell you, new facts, reexaminations of old ones, and a differing perspective can change how we come to explain the past. It matters.
Funding/Support: The Milbank Memorial Fund provided funding for this report, but the author was left unimpeded as to the research and writing.
Acknowledgments: Chris Koller, Dan Fox, Kathleen Andersen, Tara Strome, Gail Cambridge, Bob Harvey, Peter Gottsegen, and Tony Milbank at the Fund provided necessary assistance.
Conflict of Interest Disclosure: The Milbank Memorial Fund granted the author two years of assistance for her graduate school training in American Studies at Boston University, 1977-1979, through the Milbank Multi-Disciplinary Program in Health Services Research.
Address correspondence to: Susan M. Reverby, PhD, McLean Professor Emerita in the History of Ideas and Professor Emerita of Women’s and Gender Studies, Wellesley College, Wellesley, MA (email: email@example.com).
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