Bad Blood: The Tuskegee Syphilis Experiment
For nine days in August last year a group of Pueblo Indians ran from Taos, New Mexico, to the Hopi Cultural Center on Second Mesa in Arizona. Hardly a record-setting time for a distance of just over 375 miles, but then speed was not the point. In fact, this wasn’t even a race: the event commemorated the three-hundredth anniversary of the Pueblo Rebellion. In August 1680 runners bearing deerskin pictographs had sped over the same trails to coordinate the bloody and (for twelve years) successful uprising against the Spanish.
Nabokov followed their modern descendants in a pickup truck—later returning to Berkeley, as he candidly admits, to do some homework on the meaning of running in various Indian cultures, especially in the American Southwest. He draws judiciously on historical, ethnographic, and literary sources to write about everything from the Kickstick racing of the Western Pueblos to the ritual implications of running among the Papagos, Zunis, and Hopis, to the careers of several Indian Olympians. He is particularly good at rendering nuances: the ways that Indian running combines sport and spiritual discipline; how the Tricentennial Run was both a boost to Indian pride and a distinctly non-Indian mode of remembering the past; the subtle modulations of Pueblo hostility toward the white world. These qualities make for a vivid, accurate, and moving account of Pueblo life.
In 1972, a former federal investigator of venereal disease, now studying law, told an AP reporter what he knew about an obscure “Tuskegee Study”—and one of the most shameful medical experiments ever conducted in this country came to light: a forty-year study by the US Public Health Service of the effects of untreated syphilis on 399 black men in Alabama. When the story broke, Jones was a Kennedy Fellow in Bioethics at Harvard, and he has methodically investigated the serious questions that were not answered in the brief medical and public discussions following the story’s publication. Was the PHS interested in syphilis in blacks, or using blacks to study syphilis? Why was treatment withheld from those investigated, especially after penicillin became available? Why did the subjects cooperate? Why did an all-black institution, as the Tuskegee Institute was in 1932, help with the study? Was there ever any opposition to it? How did the doctors and one nurse who worked on the study view what they were doing?
The main characters in Jones’s account are those who planned, directed, and carried out the study, but he has much to say about the way the public health movement developed in the US. No one, Jones finds, ever strenuously questioned the morality of an experiment which withheld an established, effective treatment from the subjects. As a scientific study, the exercise was poorly designed. Some subjects dropped out and some were treated for other diseases—which may have affected their syphilis. The men who agreed to participate did so because 1) they were mostly illiterate and didn’t understand the terms, 2) they were poor and received free medical care for minor ailments, 3) when they died (usually of neurologic or cardiac complications of the disease), their families received a fifty-dollar burial payment, through a grant from the respected Milbank Memorial Fund.
Vitally important to keeping the program going, Jones found, was a black public health nurse named Rivers who was hired to follow the men and their families for the entire study. She tracked them down when they moved, drove them to doctor’s appointments, attended their funerals. (Even in 1972, when publicity brought the experiment to a close, she refused to believe it had harmed the men.) In 1975, as the result of a lawsuit, the government settled with the study’s survivors for free medical care for the rest of their lives, treatment for afflicted wives and children, the long promised burial payment, and some compensation for damages. New federal standards were set up for treatment of human subjects in experiments.
From Jones’s book, however, one learns almost nothing of the subjects; it is only by a chance remark that we realize that because the men weren’t treated, their wives were also infected and their children were born with congenital syphilis. And larger questions—the part racism and economic discrimination played, the need to look even harder at our current research—are not discussed. But Jones’s solid, thought-provoking evidence, gravely presented, makes its own comment.
Fond, sometimes poignant vignettes of a recent ten-month stay in the Soviet Union (parts of which have appeared in The New Yorker and elsewhere)—unusual because they might once have been titled, with sunny insouciance, “An American Girl in Russia.” Not that Andrea Lee is frivolous: eager and delighted and outgoing are more like it. She and her husband Tom, a Harvard doctoral candidate and exchange student, were housed in Moscow State University’s skyscraper dormitory; both knew Russian; she had a long attachment to Russian folklore—to “fallen fortunes” too, as her husband chided her. And there are Baba Yagas to be seen, closet aristocrats to be met; there is also, everywhere, a craze for things American. (A good communist at a Leningrad costume museum likens Americans to the costumes’ pre-revolutionary owners: “They cast a spell—oh, a wonderful spell—and they must inevitably die out.”)
The Lees not only mingle easily, they have many Russian friends—whose stories are a big part of the book’s story—and one has a very Russian sense of a life lived in common. There is rebellious, ironic Seryozha—a throw-back about to lose his spacious apartment through the denunication of his ex-wife’s parents (who want the apartment for themselves). Rima—a bustling, resilient conduit between foreigners and dissident artists (to support her surly, impecunious ex-husband, her young daughter, and her poet fiancé). Others with double or triple lives. And, briefly but memorably, she meets the notorious journalist/spy Victor Louis, ensconced with his wife in a posh country estate—“an island of European-style comfort and freedom which gives foreigners the momentary illusion of having left the Soviet Union.”
In the book’s longest sequence, Andrea covertly teaches English to Jews about to emigrate—almost none of whom knows anything about Judaism (and many of whom will never leave). There are other encounters with Soviet life—at a women’s bathhouse (where one of the cavorting, suddenly raunchy occupants shrieks, “We’re hooligans”); and chillingly, at the May Day fireworks patrolled by riot-control soldiers. This is a modest, engaging book—free of polemic or aspirations to portent.
Copyright © 1981 Kirkus Reviews