Examining Tuskegee

Since 1972, "Tuskegee" has become a word that stands for an infamous research study: a forty year endeavor on the part of the United States Public Health Service (PHS) to not treat African American men with late stage and presumably non-infectious syphilis, while promising them the aspirins, tonics and diagnostic spinal taps were treatment. The Study turned into a long effort (1932-72) to track nearly 400 men (the subjects) assumed to have the disease and nearly 200 men (the controls) assumed to be disease free in the countryside surrounding the city of Tuskegee in Macon County, Alabama. Despite the publication of a dozen research studies about the Study in medical journals over the years, there was major outrage when a newspaper reporter exposed it to the wider public in July 1972. Senate hearings, a federal investigative commission, a lawsuit, and new rules for medical and scientific research followed. Susan M. Reverby's new book, Examining Tuskegee: The Infamous Syphilis Study and its Legacy (Chapel Hill: University of North Carolina Press, 2009) brings the stories of this extraordinary study up to the present day.

In the early 1930s, syphilis — a sexually transmitted disease full of moral stigma and dangerous health effects — was a widespread public health problem in many communities across the country. As part of its effort to reach out to underserved rural black communities in particular, the Rosenwald Foundation and the PHS set up a demonstration project in six southern states to track and treat the disease. When the funds dried up in the Depression, the PHS's idea was to study in one county what happened without treatment to those assumed to no longer be contagious and in the disease's last and latent stage.

For the next forty years, the PHS came back into Macon County for more tests of the men, tried to follow up those who had left, and promised families money for burial in exchange for the right to autopsy those who died. None of the men were injected with syphilis, as it is often rumored. Not all of the men died of the disease. The doctors were supposed to choose only those not contagious, but some of the men did pass on the disease to their wives and sexual partners, and then possibly on to a fetus in utero. Despite the discovery of penicillin in the 1940s (which might have still helped some, but not all, of the men), despite a civil rights movement that engulfed the Tuskegee area, despite debates over the power of physicians, despite questions of morality of this research raised in the 1950s, the Study continued.

Moving away from seeing the men as just hapless victims and the doctors as racist monsters, Reverby captures the experiences of individuals in the Study. She finds examples of how the men might have gotten to treatment, despite the PHS's efforts. She raises questions about the kinds of medicines available for syphilis in its latent stages and what type of medical uncertainty the Study was supposed to explore. She separates out the concepts of supposed biological difference based on "race" and the practices of institutional racism.

In 1997, after much organizing from citizens and politicians, then president Bill Clinton apologized to the six remaining men from the Study and to all African Americans. Nearly forty years after the Study ended and ten years after the formal apology, "Tuskegee" is still invoked to explain the anger and fears of some black Americans over the betrayals of the federal government, the institutional racism in health care, and why medical research has to be reviewed and monitored.

In her book, Susan M. Reverby traces both what happened during those forty years, how differing individuals experienced and explained their participation, and how the Study has been remembered and evoked over the decades. She examines the Study's life in history, memory, bioethics, fiction, and political argument, exploring why evoking "Tuskegee" may not be a solution to treating racism in medicine and public health.

(http://www.examiningtuskegee.com/)

Escaping Melodramas: Reflections on Historical Events, Government Apologies and Public Outcries

NOVA--The Deadly Deception: Tuskegee Syphilis Experiment

For four decades, 400 African American men from Macon, Alabama were unwitting participants in a government study of untreated syphilis. NOVA tells the story of this notorious human experiment. George Strait, ABC News Medical Correspondent, hosts.

Original broadcast date: 01/26/93

Deadly Deception

Deadly Deception

RZ media | Myspace Video

Unequal Treatment: How African Americans have often been the unwitting victims of medical experiments

Washington Post, "Unequal Treatment: How African Americans have often been the unwitting victims of medical experiments," reviewed by Alondra Nelson, 7 January 2007:

The Tuskegee Syphilis Study remains an ignominious milestone in the intertwined histories of race and medical science in U.S. society. Initiated in 1932, this tragic 40-year long public health project resulted in almost 400 impoverished and unwitting African American men in Macon County, Ala., being left untreated for syphilis. Researchers wanted to observe how the disease progressed differently in blacks in its late stages and to examine its devastating effects with postmortem dissection.

A fresh account of the Tuskegee study, including new information about the internal politics of the panel charged by the Department of Health, Education and Welfare with investigating it in 1972, lies at the center of Harriet A. Washington's courageous and poignant book. The balance of Medical Apartheid reveals, with arresting detail, that this scandal was neither the first chapter nor the last in the exploitation of black subjects in U.S. medical research. Tuskegee was, in the author's words, "the longest and most infamous -- but hardly the worst -- experimental abuse of African Americans. It has been eclipsed in both numbers and egregiousness by other abusive medical studies."

Although medical experimentation with human subjects has historically involved vulnerable groups, including children, the poor and the institutionalized, Washington enumerates how black Americans have disproportionately borne the burden of the most invasive, inhumane and perilous medical investigations, from the era of slavery to the present day. (This burden has become global in the last few decades.) In 1855, John "Fed" Brown, an escaped slave, recalled that the doctor to whom he was indentured produced painful blisters on his body in order to observe "how deep my black skin went." This study had no therapeutic value. Rather, fascination with the outward appearance of African Americans, whose differences from whites were thought to be more than skin deep, was a significant impulse driving such medical trials.

Shielding whites from excruciating experimental procedures also proved a powerful motivation. J. Marion Sims, a leading 19th-century physician and former president of the American Medical Association, developed many of his gynecological treatments through experiments on slave women who were not granted the comfort of anesthesia. Sims's legacy is Janus-faced; he was pitiless with non-consenting research subjects, yet he was among the first doctors of the modern era to emphasize women's health. Other researchers were more guilty of blind ambition than racist intent. Several African Americans, including such as Eunice Rivers, the nurse-steward of the Tuskegee study, served as liaisons between scientists and research subjects.

The infringement of black Americans' rights to their own bodies in the name of medical science continued throughout the 20th century. In 1945, Ebb Cade, an African American trucker being treated for injuries received in an accident in Tennessee, was surreptitiously placed without his consent into a radiation experiment sponsored by the U.S. Atomic Energy Commission. Black Floridians were deliberately exposed to swarms of mosquitoes carrying yellow fever and other diseases in experiments conducted by the Army and the CIA in the early 1950s. Throughout the 1950s and '60s, black inmates at Philadelphia's Holmesburg Prison were used as research subjects by a University of Pennsylvania dermatologist testing pharmaceuticals and personal hygiene products; some of these subjects report pain and disfiguration even now. During the 1960s and '70s, black boys were subjected to sometimes paralyzing neurosurgery by a University of Mississippi researcher who believed brain pathology to be the root of the children's supposed hyperactive behavior. In the 1990s, African American youths in New York were injected with Fenfluramine -- half of the deadly, discontinued weight loss drug Fen-Phen -- by Columbia researchers investigating a hypothesis about the genetic origins of violence.

Washington's litany of experimental misdeeds done to African Americans is more extensive than can be described here. With such damning evidence, one wonders why she felt it necessary to include examples that, while clearly offensive, do not rise to the threshold of medical experimentation. For instance, supporters of slavery, to justify the peculiar institution, cited data from the 1840 census showing that free African Americans had poorer mental and physical health than enslaved blacks. Nonetheless, taking ideological liberties with questionable statistics is not, in and of itself, an example of medical experimentation, nor was circus impresario P.T. Barnum's display of black Americans as entertainment. While demonstrating the widespread exploitation of blacks, it confuses the thrust of Washington's argument.

But Washington also sheds light on how our understanding of what constitutes medical research requires broadening in the face of new developments in genetic science. Federal and state forensic DNA databases contain a disproportionate number of samples from African Americans, for example. Because genetic samples collected for this purpose carry information about a subject's health, blacks are particularly vulnerable to the exposure of sensitive medical information. And although experimentation with human subjects is less invasive than it once was, Washington cautions that it is no less injurious. Researchers still need to be mindful of the rights of their subjects.

Given the history presented in Medical Apartheid, it is no surprise that some African Americans continue to regard the medical system with apprehension, despite more stringent safeguards enacted by the federal government in the 1970s. Washington attributes this outlook, which she calls iatrophobia, to the seeds of distrust sown in black communities by the Tuskegee scandal and a history of lesser-known mistreatment.

Washington, a visiting fellow at Chicago's DePaul University, intends that Medical Apartheid serve a socially therapeutic -- if not cathartic -- function. Laying bare these atrocities, her logic goes, will foster healing and frank but necessary conversation. Clearing the air may encourage a better informed African American public to participate in clinical trials.

Despite the author's best intentions, the scale and persistence of the "dark history" she delineates may well preclude such a development. Precisely because Washington's account of racially stratified medical exploitation is so gripping, it may be difficult for the public to muster enthusiasm to enter clinical trials, no matter their cultural background. And with the experimental research burden shifting from Americans of African descent to Africa itself (which Washington calls a "continent of subjects"), Asia, and Latin America, where some cavalier researchers are seeking more plentiful and pliant subjects, readers may be more convinced than ever of the durability of the medical color line. ·

Alondra Nelson, an assistant professor of African American studies and sociology at Yale University, is writing a book, "Body and Soul: The Black Panther Party and the Politics of Health and Race." (Washington Post)

MEDICAL APARTHEID

The Dark History of Medical Experimentation on Black Americans From Colonial Times to the Present

By Harriet A. Washington

Doubleday. 501 pp. $27.95