Thursday, January 17, 2013

The Tuskegee Syphilis Experiment: A Tragedy of Race and Medicine


From the New York Times, "AN EXPERIMENT WITH LIVES," 21 June 1981, [Sunday, Late City Final Edition Section 7; Page 9, Column 1; Book Review Desk], by H. Jack Geiger  --  ''BAD BLOOD'' is the anatomy of a long nightmare - a particularly American episode in the treatment of black people. Some of the sentiments that inspired this horror, which ended a mere nine years ago, have an awful familiarity, and ''Bad Blood'' is as contemporary in its implications as yesterday's Medicaid rollbacks, today's food stamp cuts or tomorrow's definitions of the truly needy. ''Bad Blood'' is more than mere history: As an authentic, exquisitely detailed case study of the consequences of race in American life, it should be read by everyone who worries about the racial meanings of governmental policy and social practice in the United States.


The nightmare was the Tuskegee Study of Untreated Syphilis in the Negro Male, a 40-year deathwatch over the lives of more then 400 black sharecroppers in Macon County, Ala. There, from 1932 to 1972, the United States Public Health Service conducted a ''study,'' which was actually, as historian James H. Jones shows, an ugly collaboration involving Public Health Service physicians, local private practitioners (white and black), the prestigious all-black Tuskegee Institute and Hospital, the county and state health departments, even draft boards. Treatment was deliberately withheld from syphilitic men in an effort to determine the natural course of the disease, regardless of the human cost to the subjects, their wives and children or their communities; it was, in Mr. Jones's words, ''the longest nontherapeutic experiment on human beings in medical history.''

The sharecroppers were never told they had syphilis; there was mention, instead, of ''bad blood,'' which had many other meanings to them. They were never told that effective treatment was being withheld. On the contrary, they were systematically deluded into believing that they were getting free and appropriate medicines, which were, in fact, aspirin and spring tonics. In one particularly cruel deception, the uneducated black men who were called in for a spinal puncture - a painful and (under the circumstances) potentially dangerous procedure with absolutely no therapeutic effect - were sent a letter announcing their ''LAST CHANCE FOR SPECIAL FREE TREATMENT.''


After the basic physical examinations, chest X-rays, blood tests and spinal punctures, a senior physician in the study advised against ''lavishing'' any further attention on the men. ''As I see it,'' he wrote, ''we have no further interest in these patients until they die.'' Follow-up physicals called ''annual roundups'' monitored the progress of the disease; the inducement was a free hot meal. A United States Surgeon General personally signed certificates thanking 25-year survivors for their participation in the ''study,'' and a philanthropic foundation put up the money for a Public Health Service bargain: funeral payments of up to $50 in return for signed autopsy consent forms.


The ''experiment'' never had a formal design. The ''scientific observations'' were often uncontrolled.

The study was invalid from the very beginning, for many of the men had at one time or another received some (though probably inadequate) courses of arsenic, bismuth and mercury, the drugs of choice until the discovery of penicillin, and they could not be considered untreated. Much later, when penicillin and other powerful antibiotics became available, the study directors tried to prevent any physician in the area from treating the subjects - in direct opposition to the Henderson Act of 1943, which required treatment of venereal diseases.

A classic study of untreated syphilis had been completed years earlier in Oslo. Why try to repeat it? Because the physicians who initiated the Tuskegee study were determined to prove that syphilis was ''different'' in blacks. In a series of internal reviews, the last done as recently as 1969, the directors spoke of a ''moral obligation'' to continue the study. From the very beginning, no mention was made of a moral obligation to treat the sick.


When the Associated Press broke the story in 1972, a shocked public drew comparisons with the Nazis' Nuremberg experiments. Neither contrite nor apologetic, most of the study's senior physicians offered inadequate scientific defenses and improbable moral ones. ''There was no racial side to this,'' one doctor said. ''It just happened to be in a black community.'' The same defense could be offered for lynching.

There were newspaper editorials, Congressional hearings on human experimentation and a class-action lawsuit, which was settled out of court when the surviving victims and the heirs of the deceased -some of whom were children with congenital syphilis - accepted a cash payment of approximately $10 million from the Government. The study, at last, was terminated. A Government review commission failed to address the crucial racial and ethical issues - how could such a study, based on the deliberate denial of treatment, have started in the first place and continued for so long - and treated the entire ''experiment'' as an aberration, well intentioned but misguided.


And there lies the central contribution of ''Bad Blood,'' for Mr. Jones, who was a Kennedy fellow in bioethics at Harvard University and a senior research fellow at the Kennedy Institute of Ethics at Georgetown University, has gone back to the beginning and demonstrated that the study was not an aberration. He has searched the archives, reviewed the medical reports, read the physicians' official letters (full of references to ''ignorant darkies'' and ''the Ethiopian population''). The Tuskegee Study, he shows, had its roots in the Social Darwinism and pseudoscientific racial beliefs that infected American medicine - and much of American life and society - through most of the 19th and early 20th centuries, with endless warnings of a ''syphilis-soaked race,'' and of an inferior people with large genitalia and small brains being destroyed by freedom.

Mr. Jones shows that the syphilis study was part of the fabric of American life, of a racism that permeated all of America's institutions at least until the mid-1960's. The black men who were denied medical care during the Tuskegee decades were also routinely denied adequate education, an escape from the peonage of sharecropping, the right to vote, enough food to eat. Within medicine, experimentation - usually without informed consent - has always disproportionately involved the poor, the less educated and the nonwhite.

National Archives, Atlanta, GA (1932) Tuskegee Syphilis Study Pictures: Blood test and unidentified subject.


If anything, Mr. Jones is far too evenhanded, far too dispassionate, in making this point. He renounces heavyhanded moral indignation. He says he wants merely to lay out the historical record - though he also makes an attempt, which I find labored and unconvincing, to portray the Public Health Service physicians as ''liberals'' and ''reformers'' who, at least in their practice of medicine, had overcome their racism and wanted to help blacks. He even criticizes a fellow historian as ''more concerned with proving charges of racism than attempting to understand what happened.''


Yet other than through racism, how else are we to ''understand'' that people were held to be less than human, that scores of men died of a disease that could have been cured, that some had gone blind, that children were born with congenital syphilis? Only in the same way, I think, as we can ''understand'' the Midwestern physician who wrote to me this year, urging the forced sterilization of all black people on welfare and the forced removal of their children to foster homes before they acquire a ''culture of poverty.'' As a black Alabama lawyer said when he processed the claims of Tuskegee survivors, ''The sad thing is that it could happen all over again.''

Perhaps ''Bad Blood'' will make that possibility less likely. The book seethes with the realities of what really happened: the words of survivors, the memories of participants, the ''progress reports'' of racist doctors. One cannot read it without repeatedly experiencing rage, shock, disbelief and, finally, an overwhelming sorrow.  (source:  New York Times)

The Tuskegee Syphilis Experiment: A Tragedy of Race and Medicine

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