Nearly forty years ago, the Associated Press reported,
The Public Health Service, working with the Tuskegee Institute, began the study in 1932. Nearly 400 poor black men with syphilis from Macon County, Ala., were enrolled in the study. They were never told they had syphilis, nor were they ever treated for it. According to the Centers for Disease Control, the men were told they were being treated for "bad blood," a local term used to describe several illnesses, including syphilis, anemia and fatigue.
For participating in the study, the men were given free medical exams, free meals and free burial insurance.
At the start of the study, there was no proven treatment for syphilis. But even after penicillin became a standard cure for the disease in 1947, the medicine was withheld from the men. The Tuskegee scientists wanted to continue to study how the disease spreads and kills. The experiment lasted four decades, until public health workers leaked the story to the media.
But, apparently, the Tuskegee experiments were more "benign" than other related projects.
On Friday, Secretary of State Hillary Clinton and Health and Human Services Secretary Kathleen Sebelius are expected to offer extensive apologies for actions taken by the U.S. Public Health Service.
The apology will be to Guatemala and Hispanic residents of the United States, according to officials.
The first public discussion will be a telebriefing with Dr. Francis Collins, director of the National Institutes of Health and Arturo Valenzuela, Assistant Secretary of State for Western Affairs around 11 a.m. ET.
Susan M Reverby, a professor of women's studies at Wellesley College, uncovered the experimentation in an article titled
Her website bio states, "She has competed two books on what is referred to as the infamous "Tuskegee" Syphilis study (1932-72), the longest running non-therapeutic research study in U.S. history that involved the United States Public Health Service and more than 600 African American men in the counties surrounding Tuskegee, Alabama. The men thought they were being "treated," not studied, for what they thought of as "bad blood." The study has become a central metaphor for distrust of the health care system and as the key example of unethical research. She was a member of the Legacy Committee on the Tuskegee Syphilis Study that successfully lobbied President Bill Clinton to offer a public apology to the surviving men and their heirs in l997. Her edited book of articles and primary documents on the study appeared in 2000 (Tuskegee Truths: Rethinking the Tuskegee Syphilis Study). Her new book, Examining Tuskegee: The Infamous Syphilis Study and its Legacy came out in 2009. It won the Arthur Viseltear Prize from the Medical Care Section of the American Public Health Association in 2010. Please see the following website for more information: http://www.examiningtuskegee.com."
Reverby's full pre copy-edited article notes, "The story of the work in Guatemala also confirms that fact about noninfecting in the 'Tuskegee' Study, since it shows the difficulty of infecting individuals with syphilis in a scientific project. The lengths that Cutler and his colleagues had to go to give the disease to the inmates of the asylum, prison and army barracks in Guatemala, and then later in less atrocious ways at Sing Sing, provides us with a way to say this is not what happened in Tuskegee."
From the synopsis, Reverby adds,
In 1946-48, Dr. John C. Cutler, a PHS physician who would later be part of the Syphilis Study in Alabama in the 1960s and continue to defend it two decades after it ended in the 1990s, was running a syphilis inoculation project in Guatemala, co-sponsored by the PHS, the National Institutes of Health, the Pan American Health Sanitary Bureau (now the Pan American Health Organization), and the Guatemalan government.
Cutler and the other physicians chose men in the Guatemala National Penitentiary, then in an army barracks, and men and women in the National Mental Health Hospital for a total of 696 subjects. Permissions were gained from the authorities but not individuals, not an uncommon practice at the time, and supplies were offered to the institutions in exchange for access. The doctors used prostitutes with the disease to pass it to the prisoners (since sexual visits were allowed by law in Guatemalan prisons) and then did direct inoculations made from syphilis bacteria poured onto the men’s penises or on forearms and faces that were slightly abraded when the “normal exposure” produced little disease, or in a few cases through spinal punctures. Unlike in Alabama, the subjects were then given penicillin after they contracted the illness. However, whether everyone was then cured is not clear and not everyone received what was even then considered adequate treatment.
Yet the PHS was aware then that this was a study that would raise ethical questions. For as Surgeon General Thomas Parran made clear “’You know, we couldn’t do such an experiment in this country.”4 Deception was the key here as it had been in Tuskegee. Much of this was kept hushed even from some of the Guatemalan officials and information about the project only circulated in selected syphilology circles. When it proved difficult to transfer the disease and other priorities at home seemed more important, Cutler was told to pack up and come back to the States.
She also refers to experimentation done in American prisons, sometimes without prisoners' consent,
In 1944 the PHS had done experiments on prophylaxis in gonorrhea at the Terre Haute Federal Penitentiary in the United States. In this prison, the “volunteers” were deliberately injected with gonorrhea (which can be cultured), but the PHS had found it difficult to get the men to exhibit infection and the study was abandoned.
A footnote references "Subjects or Objects? Prisoners and Human Experimentation" by Dr. Barron H. Lerner, an associate professor of medicine and public health at Columbia University, New York.
During the 1950s, inmates at what was then called Holmesburg Prison, in Philadelphia, were inoculated with condyloma acuminatum, cutaneous moniliasis, and viruses causing warts, herpes simplex, and herpes zoster. (1) For participating in this research, and in studies exposing them to dioxin and agents of chemical warfare, they were paid up to $1,500 a month. Between 1963 and 1971, researchers in Oregon and Washington irradiated and repeatedly took biopsy specimens from the testicles of healthy prisoners; the men subsequently reported rashes, peeling, and blisters on the scrotum as well as sexual difficulties. (2) Hundreds of such experiments induced the federal government to essentially ban research involving prisoners in 1978. The message: such research is fundamentally exploitative and thus unethical.
Yet a recent report by the Institute of Medicine (IOM) has opened the closed door, arguing not only that such research can be performed appropriately but that prisoners deserve to be included in investigative studies -- at least those who might benefit directly. Examination of the explanations behind U.S. restrictions on prison research and their current applicability can provide guidance for today's policy debates. ....
World War II turned questionable experimentation on prisoners into a cottage industry. As other Americans risked their lives on the battlefield, prisoners did their part by participating in studies that exposed them to gonorrhea, gas gangrene, dengue fever, and malaria.(1) Any consideration of meaningful consent was subsumed by the war imperative.
Ironically, the biggest boost to such experimentation came as a result of the postwar Nuremberg trial of 20 Nazi doctors, which gave rise to the Nuremberg Code, a set of principles intended to prohibit human experimentation without subjects' consent. When defense lawyers implied that American scientists had conducted wartime research analogous to that of the Nazis, one prosecution witness, Andrew C. Ivy, cited malaria experiments involving Illinois prisoners as an example of "ideal," noncoercive research. Ivy's 1948 publication of his conclusions helped to institutionalize prison experimentation for the next quarter-century.(4)
It was an experiment involving another vulnerable population that halted the prison research enterprise. In 1972, an Associated Press reporter broke the story that poor southern black men with syphilis had been deliberately left untreated for 40 years so researchers could study the natural course of the disease. In the environment created by the civil rights movement and protests against the Vietnam War, such research was condemned. The scandal led to the formation of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research and eventually the Belmont Report, which recommended revamping human experimentation using the principles of respect for persons, nonmaleficence, and justice.
In the case of prison research, the new atmosphere proved especially restrictive. In 1978, the Department of Health and Human Services (DHHS) passed regulations that limited federally funded research involving prisoners in several ways, stipulating, for example, that experiments could pose no more than minimal risk to the subjects. The overarching concern was that prisons were inherently coercive environments in which informed consent could never be obtained. The fact that research offered financial rewards, alleviation of boredom, and the prospect of earlier parole made it even more dicey. ....
It is often said that those who ignore history are condemned to repeat it. But a decision to retain current restrictions because of past abuses would ignore several important developments. Since 1978, a network of institutional review boards has been established at the National Institutes of Health, other governmental agencies, and research universities throughout the country. With "informed consent" now common parlance, study subjects are more aware of their rights. And, largely owing to the work of AIDS activists and breast cancer activists, sick and at-risk persons, even those from potentially vulnerable populations, now actively pursue participation in research protocols. Even though not all these developments are unambiguously positive, to ignore them and the opportunities they may afford prisoners would be to regress. As the IOM report said, "Respect for prisoners also requires recognition of their autonomy."
Last December, in an article published at Huffington Post, Reverby wrote about how false reporting on the Tuskegee experiments was causing many African-Americans to distrust doctors.
Rumors and myths about what happened continue to circulate in whispers, blogs and media coverage. Most egregious in the face of the need for H1N1 vaccine is the erroneous claim that the government's doctors intentionally infected the men with syphilis. But no "Tuskegee experiment syphilis vaccine" was ever created; no shots of the bacteria that cause syphilis were put into the men's veins.
As the Obama administration takes on the huge task of reforming how we organize and pay for health care for all Americans and we line up for our shots, "Tuskegee" can offer another perhaps less obvious, if ironic, lesson. These men living in rural Alabama came forward for treatment not because they were uneducated and easily duped by their government, but because they needed health care for themselves and their families. They, as with increasing numbers of Americans, had no real access to the medical care they required, could not pay for what was available, and had to find it where possible.
Perhaps as the debate over health care reform winds its way through the Congress, a new post on Twitter should read: