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)
The Dark History of Medical Experimentation on Black Americans From Colonial Times to the Present
By Harriet A. Washington
Doubleday. 501 pp. $27.95