Slaves to American medicine (Tuskegee Experiment)
The Sunday Times Magazine
In 1972 the Tuskegee experiments on black people shocked the world. Now, a new report reveals that the official inquiry was a cover-up. John Cornwell reports
When I was a student in the 1960s, I once saw a man in the final stage of syphilis. He was a patient on a psychiatric ward in London where I was working. White-haired, olive-skinned, emaciated, without name or known country of origin, he had been picked up from a gutter in the London docks.
He stood all day in the corridor leaning against the wall, doing a slow-motion foot shuffle. He was blind, incontinent, deaf and dumb. The ward charge nurse assured me that he was “unlucky, the last of his kind”. He had not been given antibiotic treatment in time to halt the final devastation of the disease.
Equally unlucky were the victims of a clinical syphilis “trial” conducted in America during the mid-20th century, known as the Tuskegee Syphilis Study. Hundreds of poor black men suffering from syphilis were deliberately, and without their knowledge, denied first palliatives and then antibiotics in order to plot the progress of the disease untreated.
Syphilis typically recedes after first contracted, then flares up again and again in a progress that leads eventually to a terrible death. Like the disease, the Tuskegee affair lay dormant for years, with occasional reminders of its deplorable circumstances. Now it is about to erupt once more, as a new investigation of the scandal is set to reveal that the abuse of these patients by the American health authorities was far more shocking than anybody ever imagined it to be.
Among previous generations, syphilis, a bacterium that lurks in the blood of the afflicted, was a terror of the sexually adventurous. It was caught through sexual contact, or inherited in the uterus from an infected mother. Syphilis typically starts with a sore on the genitals, mouth or anus. Untreated, it lies dormant before re-emerging with symptoms such as organ deterioration. In the tertiary stage, up to several decades later, it can emerge once more in a final, devastating degeneration of the brain and central nervous system.
Once ubiquitous in Europe, syphilis’s sufferers have included Pope Alexander VI, King Henry VIII, Mozart, Abraham Lincoln, Oscar Wilde, Lenin, Al Capone and Idi Amin. The medication of choice, administered to the sores, was mercury, a painful, dangerous, and useless antidote, until the palliative Salvarsan (mainly arsenic) was developed in the early 1900s, followed by the discovery in the 1940s of the only truly effective treatment – antibiotics. But in the 1960s there were still people, often among the homeless, who had missed out on antibiotics.
Syphilis has been largely eradicated in the world today, as a result of long-forgotten research and clinical trials that tested the safety and efficacy of new medications. But memories of the Tuskegee study are still alive in America, especially among African Americans. The “trial”, conducted between 1932 and 1972, involved 400 black sharecroppers in the segregated county of Macon, Alabama, where poverty, disease, and lack of health and education were chronic. The Tuskegee “volunteers” were not to be treated, either with Salvarsan or even antibiotics after their discovery. Ignorant of the true goal of the trial, the participants were destined to be living, and dying, examples of the terrible course of the untreated illness. Tuskegee, after its exposure in the media in 1972, thus became a byword in America for racist medical experimentation.
Ernest Hendon, who died two years ago aged 96, was the last surviving “volunteer” in the project. Before his death he recollected the day in 1932 when a bus came to Macon County carrying doctors who had come to begin the study. For taking part, he said, he was promised a free medical examination and burial insurance as well as free transport to the hospital in Tuskegee. He said that on examination days he got a free hot meal. He felt unwell, but he was not sure what was wrong with him; nor was he told. He said he was given a “pink medicine”, or aspirin, and “some kinda brown-looking medicine”, which turned out to be a tonic. “Later,” Ernest said, “they give me a test in the back and they draw something out of me.” During the 40 years of the Tuskegee Syphilis Study, Ernest continued his examinations, and after 25 years he received a certificate of appreciation from the United States surgeon-general. Ernest, as sometimes happened with syphilis sufferers, had gone into remission without treatment – hence his survival into old age. Most other members of the study were not nearly so fortunate.
Soon after the Tuskegee revelations, fault was admitted, apologies made, clinical trial safeguards established. Yet in time, historians of medicine, sociologists and social anthropologists began to play down the scandal. Tuskegee, they argued, was an understandable error, given the absence of viable antidotes in the 1930s. An essay published two years ago by Richard Shweder, professor of anthropology at the University of Chicago, proposed a “counter-narrative” to the scandal. “A reasonable person might conclude,” he wrote, “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.” As with other revisionists, Shweder emphasises that much of the original horror about Tuskegee was a result of the story, false as it happens, that volunteers had been deliberately infected with syphilis. As the affair receded into history, views such as Shweder’s have been received without much fuss.
But renewed outrage over Tuskegee is about to explode with an investigation entitled Medical Apartheid, to be published in the US early next year. The public-health historian Harriet Washington will reveal, after scrutinising unseen archival evidence and interviewing surviving physicians and volunteers, that the Tuskegee trial was even more inhumane and morally degenerate than previously suspected.
Washington’s researches show that the Public Health Service of the United States proceeded from a deeply racist premise: that syphilis developed differently in blacks from in whites. The bacterium, according to health officials at the time, targeted the sophisticated large brains of white people, whereas it affected only the cardiovascular systems of blacks, whose brains, it was considered, were underdeveloped. One leading Public Health Service (PHS) officer, Doctor Thomas Murrell, held the view that syphilis would provide a solution to the problem of the criminal black classes: “Perhaps here will be the end of the negro problem. Disease will accomplish what man cannot do.” Another “expert” blamed the estimated, and wildly exaggerated, 95% syphilis rate among blacks in America on sexual incontinence, ignoring the existence of congenital syphilis.
The Tuskegee study began with an invitation, extended to the entire population of Macon County, to attend a clinic for a free health examination. According to Eunice Rivers, a black nurse who worked with the project until the mid-1960s, the clinic was “overflooded” with people. Evidence now reveals that the Tuskegee health officials disguised their true intentions from the outset by declaring that treatment was being offered for “bad blood”, a common term among poor working people, covering a wide range of complaints. The so-called treatment, according to Nurse Rivers, was no more than vitamins, and mercury for those suspected of suffering from syphilis. The physicians selected suspected syphilitic males for further tests, including spinal taps to gauge the path of the disease into the brain. Some 400 men were chosen, their recall phrased as follows: “Remember this is your last chance for special free treatment.” After the spinal taps, the men were given nothing more efficacious than aspirin. A “control” group of uninfected men were selected, they too solicited with promises of free medication. According to Washington, whenever members of the control group caught syphilis they were transferred to the infected group, thus destroying the integrity of the study.
By this stage the study was directed by Dr Raymond Vonderlehr, who said: “It is my desire to keep the main purpose of the work from the negroes in the county and to continue their interest in treatment.” In 1933 a senior officer for the PHS stated: “We have no further interest in these patients until they die.” The study included a plan to perform autopsies, to establish damage to the volunteers’ brains and organs.
The role of Nurse Eunice Rivers became crucial as she kept track of the men, paying regular visits to their homes and promoting the fiction that “treatment” was being provided. She dispensed aspirin, vitamins and occasional small gifts of money. She was to ensure that the dying participants would be brought to hospital to ensure an autopsy and so bring those individuals’ case histories to a satisfactory scientific conclusion. Part of her tactic of inducement was to promise a free burial. Above all, her task, aided by the study’s doctors, was to ensure that the syphilitic men would receive no treatment, despite the extraordinary advances in treatment from the 1940s onwards. Vonderlehr remarked as late as 1952: “I hope that the availability of antibiotics has not interfered too much with this project.” About 7% of the men received treatment in error. But when volunteers in the study were drafted during the second world war, they were exempted from service, and, if selected for a VD clinic, excluded from treatment on the orders of PHS officials. “By 1955,” according to Washington, “nearly one-third of the autopsied men had died directly of syphilis and many of the survivors were suffering its deadliest complications.” Dr OC Wenger, the PHS chief of syphilis treatment, boasted earlier: “We now know that we have contributed to their ailments and shortened their lives.” Even the US surgeon-general Thomas Parran, an ardent advocate of eradicating syphilis through penicillin during the 1940s, argued that the Tuskegee Syphilis Study offered a unique “opportunity” to understand the disease.
The study continued its work right up to 1972, when it was exposed in July by Associated Press owing to evidence given by a former PHS official, Peter Buxtun. In the ensuing outcry it could not be denied that effective treatment had been withheld. But the extent of the health officials’ duplicitous tactics is only about to come to light with Harriet Washington’s findings.
After hearings under the chairmanship of Ted Kennedy, a committee of distinguished experts, known as the Tuskegee Ad Hoc Panel of medical experts, academics and lawyers, was established in 1972 to take decisions about the study. Five members of the panel were black and four were white. According to Washington’s research, the committee was given just seven months to scrutinise a 40-year project, and was beset with rows and dissensions. Some good things came out of their deliberations, not least future federally based provision for the protection of human volunteers in medical research. They did not, however, deliver a judgment on the failure to provide treatment from the outset in the form of Salvarsan. They also failed, in Washington’s view, to address the crucial ethical question: “The key issue,” she insists, “is that the men had never been informed that they were in an experiment at all. They thought they were only receiving treatment.” Moreover, the report failed to “condemn the racist mentality that informed the study”. Two members of the committee — the physician Dr Vernal Cave and Dr Jay Katz, a Yale psychiatrist and professor of law, believed at the time that the chairman, Dr Broadus Butler, had been appointed to achieve a government whitewash. Washington is convinced that the panel had been persuaded to “water down” its findings by Butler. He then defused its toughest allegations by dissociating himself from the entire report with a covering letter expressing the view that it was unnecessarily harsh. More shocking, 30 years after the report, it has emerged that government staff denied the panel access to relevant documents – in Washington’s view indicating a high-level cover-up.
But now it is revealed that the panel itself was involved in its own scandalous cover-up. The Ad Hoc members travelled to Macon County, where they interviewed on tape a number of people, including Nurse Rivers. Chairman Butler put it to the committee that Rivers’s reputation might suffer should the tape be preserved. The tape was then burnt.
After the study was wound up in 1972, the Macon County attorney Fred Gray filed a $2 billion damages civil action against the responsible health agencies on behalf of the survivors. In the event only $10m was paid in an out-of-court settlement, providing a mere $37,500 for each participant and $15,000 for his heirs. About 40 wives or girlfriends and 19 children died of infection passed on by the men, .
Will Washington’s study be the last word on the Tuskegee scandal? There are still vexing questions that require further evidence. Ten years back, a harrowing allegation was raised in the Harvard Journal of Minority Public Health by Dr Benjamin Roy, an Atlanta senior medical researcher. He is convinced that the chief medical importance of the experiment was to provide a stock of infected men acting as living repositories of the disease. In advance of biotechnology’s capacity to culture cells in Petri dishes to preserve living pathogens such as syphilis, the Tuskegee men represented a reliable supply of syphilis for study. This, according to Roy, explains why the men had so many spinal taps and blood tests. It is widely accepted that samples of the disease taken from the men led to the creation of diagnostic tests on which the American government laid intellectual-property claims with accompanying financial rewards.
Washington claims that the Tuskegee Syphilis Study “is the longest and the most infamous, but hardly the worst experimental abuse of African Americans” (see previous page). In a wider context of post-war abuse, however, few industrialised nations can be proud of their record on non-consensual tests. Between 1950 and 1969 the US carried out a range of tests involving chemical and biological agents, radioactive material and drugs on unsuspecting civilians, or subjects with little political clout – people in the military, prison inmates, mental patients. For example, in the 1960s, scientists at the Hanford Nuclear Reservation in Washington state contaminated a district of some 8,000 square miles by releasing quantities of radioactive substances into the atmosphere to assist the military in assessing contamination from the Soviet plutonium factories. In a series of nuclear tests conducted by Britain during the 1950s on Australian islands and the Australian mainland, military personnel were deliberately exposed to the blasts to establish the effects of radiation. During the course of the cold war, nations with high moral pretensions put perceptions of national security before the interests of individuals.
Closer to our own day, and despite the lessons of Tuskegee, the tendency to balance the rights of individuals with the proclaimed needs of medical science has resulted in widespread scandals in sub-Saharan Africa. In a clinical trail in Uganda, funded by America’s National Institutes of Health in the 1990s, women were administered courses of the Aids retroviral drug AZT, and nevirapine, which prevents Aids being passed from a pregnant mother to the foetus. In parallel, a control group of pregnant women suffering from Aids was administered a placebo, a sugar pill, to test the efficacy of the trial drugs. Defenders of the trial argued that in the normal course of events, women in Uganda would not have received treatment anyway. The trial was halted following an outcry by medical ethicists who argued that failure to administer a medicine to a control group when an effective drug was available was to treat humans as guinea pigs.
These and other current scandals will be aired in The Body Hunters, a powerful study by Sonia Shah that is due out this autumn in the United States. Shah argues that the giant drug companies are aggressively testing medicines on vulnerable patients in the Third World for the benefit of patients in the West, while neglecting the provision of affordable medication to the poor. Her book cites the instance of tenofovir, an Aids medicine tested in several African countries by the drug company Gilead Sciences. Médecins Sans Frontières has criticised Gilead for failing to deliver on a four-year-old promise to provide a cheap version of tenofovir to poorer countries.
At a time when the cost of developing new drugs is counted in hundreds of millions of pounds, and when no more than 1 in 100 makes it to the market, the pharmaceutical giants cannot separate the huge cost of developing new drugs from making profits when they are successful. Clinical trials on humans, moreover, always carry risks. In early July, the German company TeGenero went bankrupt 16 weeks after six healthy volunteers almost died in Northwick Park, London, after taking part in clinical trials of an anti-immune drug for arthritis, setting back the prospects of scores of similar drugs in costly development. The need for medical advances, let alone profits, cannot justify short cuts in clinical trials, never mind deception and abuse of patients.
Writing in the New England Journal of Medicine after the closure of the Aids Uganda trial, the editor, Marcia Angell, commented: “It seems as if we have not come very far from Tuskegee after all.” Harriet Washington’s investigation, along with evidence of persisting unethical practices down the years, stresses the need for renewed vigilance, especially where trials are conducted among poor and underprivileged people. The ghost of Tuskegee is about to return to haunt the conscience of America – a deeply shameful reminder of the country’s racist recent past that can no longer be allowed to recede quietly into history.
A HISTORY OF EXPERIMENTATION
Illegal medical testing on poor African Americans is far from new. Harriet Washington runs through America’s long list of shameful patient trials, which are clearly far from over
Tuskegee was neither the first nor the last time that black people in America have been exploited by the medical system. The extreme racial divide has always made blacks cheap, easily available and powerless, “legally invisible” research subjects. Physicians’ own notebooks, letters and journal articles detail this medical apartheid as they describe subjecting blacks to dangerous, painful, degrading procedures that for many years nobody questioned. During the 1820s and 1830s, for example, Dr Thomas Hamilton, of Clinton, Georgia, forced the slave John Brown to sit repeatedly in a heated pit until he fainted, in order to test various remedies for heatstroke. He also flayed skin from Brown’s body to see how deep its black pigment went. Dr James Marion Sims, of Montgomery, Alabama, acquired women slaves who were then forcibly restrained by his colleagues as he operated on their genitalia, sans anaesthetic, to perfect a surgical repair of the devastating childbirth injury vesicovaginal fistula. It was a “triumph” that made his global reputation.
Scientists also exploited blacks for clumsily performed, frequently fraudulent research that “proved” their inferiority. The end result was scientific racism, an unflattering collection of beliefs about black physiology, intellect and character that still stubbornly haunts our discussions of race and medicine. Among its tenets: blacks were physically and mentally inferior to whites, and these differences made blacks prey to unique illnesses. It was a common belief among many scientists that blacks were bestial and unable to control their violent rages, appetites and powerful sex drives, were neglectful parents and needed white supervision to survive.
In the 1940s and 50s, scientists cited the exigencies of war, exposing Americans to radiation in order to gauge its probable effects on soldiers.
Even children were not spared. In 1946 researchers fed radiation-laced oatmeal to institutionalised children at the state-operated Fernald school. In the early 1970s, Johns Hopkins researchers enrolled institutionalised black boys in a genetics-of-violence study. Today the numbers of abusive experiments are far fewer, but the patterns persist. Within the past decade, the Office for Protection from Research Risks has investigated abuses at more than 60 research centres, including deaths at such revered institutions as Pennsylvania, Duke, Yale, and even Johns Hopkins Universities.
In 1994 the University of South Carolina enrolled poor black women seeking drug treatment and prenatal care into an experimental programme without their knowledge, and turned those with a positive drug screen over to the police.
During the mid-1990s, researchers of Kennedy Krieger Institute (KKI) encouraged poor black Baltimore families to move into lead-tainted housing, which enabled the KKI to study the often dramatic rise in child tenant’s blood lead levels. In 1995, an experimental measles vaccine was administered to black and Hispanic Los Angeles children. Their parents were unaware that the vaccine was experimental and that an earlier study had been halted when it caused the deaths of hundreds of Third World children.
Between 1996 and 1999, Columbia University administered the notoriously cardiotoxic drug Fenfluramine to 135 young black boys as part of a genetics-of-violence study.
As this article goes to press, a government panel is considering welcoming research back to the civil-rights desert of prisons, where so many experiments have maimed and maddened inmates in the past. Although the worst medical investigative abuses have abated within US borders, they have not disappeared: they have been imported to the Third World, where non-consensual, exploitative, inordinately risky research is conducted by American scientists and supported by American institutions – once again, upon poor people of colour.
In 1972 the Tuskegee experiments on black people shocked the world. Now, a new report reveals that the official inquiry was a cover-up. John Cornwell reports
When I was a student in the 1960s, I once saw a man in the final stage of syphilis. He was a patient on a psychiatric ward in London where I was working. White-haired, olive-skinned, emaciated, without name or known country of origin, he had been picked up from a gutter in the London docks.
He stood all day in the corridor leaning against the wall, doing a slow-motion foot shuffle. He was blind, incontinent, deaf and dumb. The ward charge nurse assured me that he was “unlucky, the last of his kind”. He had not been given antibiotic treatment in time to halt the final devastation of the disease.
Equally unlucky were the victims of a clinical syphilis “trial” conducted in America during the mid-20th century, known as the Tuskegee Syphilis Study. Hundreds of poor black men suffering from syphilis were deliberately, and without their knowledge, denied first palliatives and then antibiotics in order to plot the progress of the disease untreated.
Syphilis typically recedes after first contracted, then flares up again and again in a progress that leads eventually to a terrible death. Like the disease, the Tuskegee affair lay dormant for years, with occasional reminders of its deplorable circumstances. Now it is about to erupt once more, as a new investigation of the scandal is set to reveal that the abuse of these patients by the American health authorities was far more shocking than anybody ever imagined it to be.
Among previous generations, syphilis, a bacterium that lurks in the blood of the afflicted, was a terror of the sexually adventurous. It was caught through sexual contact, or inherited in the uterus from an infected mother. Syphilis typically starts with a sore on the genitals, mouth or anus. Untreated, it lies dormant before re-emerging with symptoms such as organ deterioration. In the tertiary stage, up to several decades later, it can emerge once more in a final, devastating degeneration of the brain and central nervous system.
Once ubiquitous in Europe, syphilis’s sufferers have included Pope Alexander VI, King Henry VIII, Mozart, Abraham Lincoln, Oscar Wilde, Lenin, Al Capone and Idi Amin. The medication of choice, administered to the sores, was mercury, a painful, dangerous, and useless antidote, until the palliative Salvarsan (mainly arsenic) was developed in the early 1900s, followed by the discovery in the 1940s of the only truly effective treatment – antibiotics. But in the 1960s there were still people, often among the homeless, who had missed out on antibiotics.
Syphilis has been largely eradicated in the world today, as a result of long-forgotten research and clinical trials that tested the safety and efficacy of new medications. But memories of the Tuskegee study are still alive in America, especially among African Americans. The “trial”, conducted between 1932 and 1972, involved 400 black sharecroppers in the segregated county of Macon, Alabama, where poverty, disease, and lack of health and education were chronic. The Tuskegee “volunteers” were not to be treated, either with Salvarsan or even antibiotics after their discovery. Ignorant of the true goal of the trial, the participants were destined to be living, and dying, examples of the terrible course of the untreated illness. Tuskegee, after its exposure in the media in 1972, thus became a byword in America for racist medical experimentation.
Ernest Hendon, who died two years ago aged 96, was the last surviving “volunteer” in the project. Before his death he recollected the day in 1932 when a bus came to Macon County carrying doctors who had come to begin the study. For taking part, he said, he was promised a free medical examination and burial insurance as well as free transport to the hospital in Tuskegee. He said that on examination days he got a free hot meal. He felt unwell, but he was not sure what was wrong with him; nor was he told. He said he was given a “pink medicine”, or aspirin, and “some kinda brown-looking medicine”, which turned out to be a tonic. “Later,” Ernest said, “they give me a test in the back and they draw something out of me.” During the 40 years of the Tuskegee Syphilis Study, Ernest continued his examinations, and after 25 years he received a certificate of appreciation from the United States surgeon-general. Ernest, as sometimes happened with syphilis sufferers, had gone into remission without treatment – hence his survival into old age. Most other members of the study were not nearly so fortunate.
Soon after the Tuskegee revelations, fault was admitted, apologies made, clinical trial safeguards established. Yet in time, historians of medicine, sociologists and social anthropologists began to play down the scandal. Tuskegee, they argued, was an understandable error, given the absence of viable antidotes in the 1930s. An essay published two years ago by Richard Shweder, professor of anthropology at the University of Chicago, proposed a “counter-narrative” to the scandal. “A reasonable person might conclude,” he wrote, “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.” As with other revisionists, Shweder emphasises that much of the original horror about Tuskegee was a result of the story, false as it happens, that volunteers had been deliberately infected with syphilis. As the affair receded into history, views such as Shweder’s have been received without much fuss.
But renewed outrage over Tuskegee is about to explode with an investigation entitled Medical Apartheid, to be published in the US early next year. The public-health historian Harriet Washington will reveal, after scrutinising unseen archival evidence and interviewing surviving physicians and volunteers, that the Tuskegee trial was even more inhumane and morally degenerate than previously suspected.
Washington’s researches show that the Public Health Service of the United States proceeded from a deeply racist premise: that syphilis developed differently in blacks from in whites. The bacterium, according to health officials at the time, targeted the sophisticated large brains of white people, whereas it affected only the cardiovascular systems of blacks, whose brains, it was considered, were underdeveloped. One leading Public Health Service (PHS) officer, Doctor Thomas Murrell, held the view that syphilis would provide a solution to the problem of the criminal black classes: “Perhaps here will be the end of the negro problem. Disease will accomplish what man cannot do.” Another “expert” blamed the estimated, and wildly exaggerated, 95% syphilis rate among blacks in America on sexual incontinence, ignoring the existence of congenital syphilis.
The Tuskegee study began with an invitation, extended to the entire population of Macon County, to attend a clinic for a free health examination. According to Eunice Rivers, a black nurse who worked with the project until the mid-1960s, the clinic was “overflooded” with people. Evidence now reveals that the Tuskegee health officials disguised their true intentions from the outset by declaring that treatment was being offered for “bad blood”, a common term among poor working people, covering a wide range of complaints. The so-called treatment, according to Nurse Rivers, was no more than vitamins, and mercury for those suspected of suffering from syphilis. The physicians selected suspected syphilitic males for further tests, including spinal taps to gauge the path of the disease into the brain. Some 400 men were chosen, their recall phrased as follows: “Remember this is your last chance for special free treatment.” After the spinal taps, the men were given nothing more efficacious than aspirin. A “control” group of uninfected men were selected, they too solicited with promises of free medication. According to Washington, whenever members of the control group caught syphilis they were transferred to the infected group, thus destroying the integrity of the study.
By this stage the study was directed by Dr Raymond Vonderlehr, who said: “It is my desire to keep the main purpose of the work from the negroes in the county and to continue their interest in treatment.” In 1933 a senior officer for the PHS stated: “We have no further interest in these patients until they die.” The study included a plan to perform autopsies, to establish damage to the volunteers’ brains and organs.
The role of Nurse Eunice Rivers became crucial as she kept track of the men, paying regular visits to their homes and promoting the fiction that “treatment” was being provided. She dispensed aspirin, vitamins and occasional small gifts of money. She was to ensure that the dying participants would be brought to hospital to ensure an autopsy and so bring those individuals’ case histories to a satisfactory scientific conclusion. Part of her tactic of inducement was to promise a free burial. Above all, her task, aided by the study’s doctors, was to ensure that the syphilitic men would receive no treatment, despite the extraordinary advances in treatment from the 1940s onwards. Vonderlehr remarked as late as 1952: “I hope that the availability of antibiotics has not interfered too much with this project.” About 7% of the men received treatment in error. But when volunteers in the study were drafted during the second world war, they were exempted from service, and, if selected for a VD clinic, excluded from treatment on the orders of PHS officials. “By 1955,” according to Washington, “nearly one-third of the autopsied men had died directly of syphilis and many of the survivors were suffering its deadliest complications.” Dr OC Wenger, the PHS chief of syphilis treatment, boasted earlier: “We now know that we have contributed to their ailments and shortened their lives.” Even the US surgeon-general Thomas Parran, an ardent advocate of eradicating syphilis through penicillin during the 1940s, argued that the Tuskegee Syphilis Study offered a unique “opportunity” to understand the disease.
The study continued its work right up to 1972, when it was exposed in July by Associated Press owing to evidence given by a former PHS official, Peter Buxtun. In the ensuing outcry it could not be denied that effective treatment had been withheld. But the extent of the health officials’ duplicitous tactics is only about to come to light with Harriet Washington’s findings.
After hearings under the chairmanship of Ted Kennedy, a committee of distinguished experts, known as the Tuskegee Ad Hoc Panel of medical experts, academics and lawyers, was established in 1972 to take decisions about the study. Five members of the panel were black and four were white. According to Washington’s research, the committee was given just seven months to scrutinise a 40-year project, and was beset with rows and dissensions. Some good things came out of their deliberations, not least future federally based provision for the protection of human volunteers in medical research. They did not, however, deliver a judgment on the failure to provide treatment from the outset in the form of Salvarsan. They also failed, in Washington’s view, to address the crucial ethical question: “The key issue,” she insists, “is that the men had never been informed that they were in an experiment at all. They thought they were only receiving treatment.” Moreover, the report failed to “condemn the racist mentality that informed the study”. Two members of the committee — the physician Dr Vernal Cave and Dr Jay Katz, a Yale psychiatrist and professor of law, believed at the time that the chairman, Dr Broadus Butler, had been appointed to achieve a government whitewash. Washington is convinced that the panel had been persuaded to “water down” its findings by Butler. He then defused its toughest allegations by dissociating himself from the entire report with a covering letter expressing the view that it was unnecessarily harsh. More shocking, 30 years after the report, it has emerged that government staff denied the panel access to relevant documents – in Washington’s view indicating a high-level cover-up.
But now it is revealed that the panel itself was involved in its own scandalous cover-up. The Ad Hoc members travelled to Macon County, where they interviewed on tape a number of people, including Nurse Rivers. Chairman Butler put it to the committee that Rivers’s reputation might suffer should the tape be preserved. The tape was then burnt.
After the study was wound up in 1972, the Macon County attorney Fred Gray filed a $2 billion damages civil action against the responsible health agencies on behalf of the survivors. In the event only $10m was paid in an out-of-court settlement, providing a mere $37,500 for each participant and $15,000 for his heirs. About 40 wives or girlfriends and 19 children died of infection passed on by the men, .
Will Washington’s study be the last word on the Tuskegee scandal? There are still vexing questions that require further evidence. Ten years back, a harrowing allegation was raised in the Harvard Journal of Minority Public Health by Dr Benjamin Roy, an Atlanta senior medical researcher. He is convinced that the chief medical importance of the experiment was to provide a stock of infected men acting as living repositories of the disease. In advance of biotechnology’s capacity to culture cells in Petri dishes to preserve living pathogens such as syphilis, the Tuskegee men represented a reliable supply of syphilis for study. This, according to Roy, explains why the men had so many spinal taps and blood tests. It is widely accepted that samples of the disease taken from the men led to the creation of diagnostic tests on which the American government laid intellectual-property claims with accompanying financial rewards.
Washington claims that the Tuskegee Syphilis Study “is the longest and the most infamous, but hardly the worst experimental abuse of African Americans” (see previous page). In a wider context of post-war abuse, however, few industrialised nations can be proud of their record on non-consensual tests. Between 1950 and 1969 the US carried out a range of tests involving chemical and biological agents, radioactive material and drugs on unsuspecting civilians, or subjects with little political clout – people in the military, prison inmates, mental patients. For example, in the 1960s, scientists at the Hanford Nuclear Reservation in Washington state contaminated a district of some 8,000 square miles by releasing quantities of radioactive substances into the atmosphere to assist the military in assessing contamination from the Soviet plutonium factories. In a series of nuclear tests conducted by Britain during the 1950s on Australian islands and the Australian mainland, military personnel were deliberately exposed to the blasts to establish the effects of radiation. During the course of the cold war, nations with high moral pretensions put perceptions of national security before the interests of individuals.
Closer to our own day, and despite the lessons of Tuskegee, the tendency to balance the rights of individuals with the proclaimed needs of medical science has resulted in widespread scandals in sub-Saharan Africa. In a clinical trail in Uganda, funded by America’s National Institutes of Health in the 1990s, women were administered courses of the Aids retroviral drug AZT, and nevirapine, which prevents Aids being passed from a pregnant mother to the foetus. In parallel, a control group of pregnant women suffering from Aids was administered a placebo, a sugar pill, to test the efficacy of the trial drugs. Defenders of the trial argued that in the normal course of events, women in Uganda would not have received treatment anyway. The trial was halted following an outcry by medical ethicists who argued that failure to administer a medicine to a control group when an effective drug was available was to treat humans as guinea pigs.
These and other current scandals will be aired in The Body Hunters, a powerful study by Sonia Shah that is due out this autumn in the United States. Shah argues that the giant drug companies are aggressively testing medicines on vulnerable patients in the Third World for the benefit of patients in the West, while neglecting the provision of affordable medication to the poor. Her book cites the instance of tenofovir, an Aids medicine tested in several African countries by the drug company Gilead Sciences. Médecins Sans Frontières has criticised Gilead for failing to deliver on a four-year-old promise to provide a cheap version of tenofovir to poorer countries.
At a time when the cost of developing new drugs is counted in hundreds of millions of pounds, and when no more than 1 in 100 makes it to the market, the pharmaceutical giants cannot separate the huge cost of developing new drugs from making profits when they are successful. Clinical trials on humans, moreover, always carry risks. In early July, the German company TeGenero went bankrupt 16 weeks after six healthy volunteers almost died in Northwick Park, London, after taking part in clinical trials of an anti-immune drug for arthritis, setting back the prospects of scores of similar drugs in costly development. The need for medical advances, let alone profits, cannot justify short cuts in clinical trials, never mind deception and abuse of patients.
Writing in the New England Journal of Medicine after the closure of the Aids Uganda trial, the editor, Marcia Angell, commented: “It seems as if we have not come very far from Tuskegee after all.” Harriet Washington’s investigation, along with evidence of persisting unethical practices down the years, stresses the need for renewed vigilance, especially where trials are conducted among poor and underprivileged people. The ghost of Tuskegee is about to return to haunt the conscience of America – a deeply shameful reminder of the country’s racist recent past that can no longer be allowed to recede quietly into history.
A HISTORY OF EXPERIMENTATION
Illegal medical testing on poor African Americans is far from new. Harriet Washington runs through America’s long list of shameful patient trials, which are clearly far from over
Tuskegee was neither the first nor the last time that black people in America have been exploited by the medical system. The extreme racial divide has always made blacks cheap, easily available and powerless, “legally invisible” research subjects. Physicians’ own notebooks, letters and journal articles detail this medical apartheid as they describe subjecting blacks to dangerous, painful, degrading procedures that for many years nobody questioned. During the 1820s and 1830s, for example, Dr Thomas Hamilton, of Clinton, Georgia, forced the slave John Brown to sit repeatedly in a heated pit until he fainted, in order to test various remedies for heatstroke. He also flayed skin from Brown’s body to see how deep its black pigment went. Dr James Marion Sims, of Montgomery, Alabama, acquired women slaves who were then forcibly restrained by his colleagues as he operated on their genitalia, sans anaesthetic, to perfect a surgical repair of the devastating childbirth injury vesicovaginal fistula. It was a “triumph” that made his global reputation.
Scientists also exploited blacks for clumsily performed, frequently fraudulent research that “proved” their inferiority. The end result was scientific racism, an unflattering collection of beliefs about black physiology, intellect and character that still stubbornly haunts our discussions of race and medicine. Among its tenets: blacks were physically and mentally inferior to whites, and these differences made blacks prey to unique illnesses. It was a common belief among many scientists that blacks were bestial and unable to control their violent rages, appetites and powerful sex drives, were neglectful parents and needed white supervision to survive.
In the 1940s and 50s, scientists cited the exigencies of war, exposing Americans to radiation in order to gauge its probable effects on soldiers.
Even children were not spared. In 1946 researchers fed radiation-laced oatmeal to institutionalised children at the state-operated Fernald school. In the early 1970s, Johns Hopkins researchers enrolled institutionalised black boys in a genetics-of-violence study. Today the numbers of abusive experiments are far fewer, but the patterns persist. Within the past decade, the Office for Protection from Research Risks has investigated abuses at more than 60 research centres, including deaths at such revered institutions as Pennsylvania, Duke, Yale, and even Johns Hopkins Universities.
In 1994 the University of South Carolina enrolled poor black women seeking drug treatment and prenatal care into an experimental programme without their knowledge, and turned those with a positive drug screen over to the police.
During the mid-1990s, researchers of Kennedy Krieger Institute (KKI) encouraged poor black Baltimore families to move into lead-tainted housing, which enabled the KKI to study the often dramatic rise in child tenant’s blood lead levels. In 1995, an experimental measles vaccine was administered to black and Hispanic Los Angeles children. Their parents were unaware that the vaccine was experimental and that an earlier study had been halted when it caused the deaths of hundreds of Third World children.
Between 1996 and 1999, Columbia University administered the notoriously cardiotoxic drug Fenfluramine to 135 young black boys as part of a genetics-of-violence study.
As this article goes to press, a government panel is considering welcoming research back to the civil-rights desert of prisons, where so many experiments have maimed and maddened inmates in the past. Although the worst medical investigative abuses have abated within US borders, they have not disappeared: they have been imported to the Third World, where non-consensual, exploitative, inordinately risky research is conducted by American scientists and supported by American institutions – once again, upon poor people of colour.
