THIS IS A VALUABLE, superbly researched, fairminded, profoundly troubling, and clearly written book. It is too bad, but surely no fault of the author, a historian and a former senior research fellow at the Kennedy Institute of Ethics at Georgetown University, that the hype he wisely shunned oozed -- counterproductively -- onto the glossy front of the dustjacket. Here we are told that "science went mad." No reader of the text can miss the fundamental point that somehow eluded the publisher: it was nonscience that "went mad" -- if anything did.
Another preliminary point: James H. Jones shows that racism entwined with nonscience permeated "the longest nontherapeutic experiment on human beings in medical history." I wish he had driven home the truth that racist nonscience is a vile manifestation, but not the only manifestation, of the inhumanity that has always thrived, even in racially, ethically, and religiously homogeneous societies. That is what was understood by Rabbi Hillel, a century before Christ, when he said, "Do not unto any man that which you would not have done to yourself"; by Moses Maimonides, a rabbi and physician in the 12th century: "May I never see in the patient anything but a fellow creature in pain"; by John Stuart Mill in the 19th century: "A governing class not accountable to the people are sure, in the main, to sacrifice the people to the pursuit of separate interests and inclinations of their own."
In the Alabama "experiment," the victims were more that 400 dirt-poor, rural, hungry, ignorant, and trusting -- that is to say, easily manipulable -- syphilitic black men. For 40 years, until Jean Heller, then of the Associated Press, blew the whistle in 1972, U.S. Public Health Service physicians -- doing what they believed was "right" and never corrupted by contrition -- did unto others what they would not do unto themselves, saw in their patients anything but creatures in pain, and purposely sacrificed people to the pursuit of separate interests of their own. They were educated men betraying the unlettered men who trusted them in what Jones calls "a 40-year saga of lies and deceit."
Bribing the men with burial insurance and free food and transportation; conning them by telling them not that they had syphilis, but "bad blood," which they understood to cover most ailments; disarming them by enlisting the prestigious Tuskegee Institute and black physicians, who, incredibly, volunteered to withhold antibiotics for any infections at all; pretending to treat them, and tricking them into submitting to extremely painful spinal punctures -- doing all of these things, the PHS, a bureaucracy one wants to esteem, denied them treatment, even wondrously effective penicillin after 1953, so that it could track the long-term course of untreated syphilis in the Negro.
Jones relentlessly documents the importance of racism in every last aspect of this miserable episode."So great was their preoccupation with black sexual behavior that physicians completely ignored the plight of black infants who were born with the disease through no fault of their own," he says.
Science? A well-known study published in 1929 documented the cardiovascular and neurologic damage done to several hundred men with primary or secondary syphilis who were followed but not treated between 1891 and 1910 at the Oslo Clinic in Norway. But these were whites. "Anyone not predisposed to find differences might have looked at these facts and concluded that the disease was affecting both races in the same way," Jones writes. Moreover, "belief in the notion that syphilis developed differently in blacks and whites ran through every echelon of the medical profession."
A year after the "experiment" began, one of its guiding PHS lights, Dr. Raymond A. Vonderlehr submitted his diagnoses to the American Heart Association for confirmation. Instead, the AHA "totally rejected the scientific validity of the procedures and tests upon which the diagnoses had been based."
All of the men received a little treatment. This fatally contaminated the "experiment," Jones emphasizes. "As a study of the effect of undertreated syphilis, the experiment perhaps had some value; as a study of the effects of untreated syphilis, it was useless." Vonderlehr was "totally blind" to this, being "absolutely convinced that the experiment had scientific merit" and "sure that the PHS was standing on the brink of important discoveries." Another PHS doctor, James B. Lucas, said the little treatment made for "bad science" -- but said the "experiment" must go on.
The exposure of the "experiment" led to an enormous outcry in the press, North and South, in which comparisons to Nazi medical "experiments" were justly made; to a compassionate hearing by Senator Edward M. Kennedy (D-Mass.), and to a $10 million out-of-court settlement. The heightened sensitivity and the new rules for human experimentation that followed came very late, after hundreds upon hundreds of redundant, dangerous, painful, and useless "experiments" performed without regard to skin color in the poor, the mentally defective, the imprisoned, and the possibly pregnant (such as those who were told they were getting vitamin pills when they were given the sex-hormone DES). And some "experiments," such as the selling in Latin America of medicines that can't be sold in the United States because they have not been shown to be safe and effective, continue this very day.