HISTORY 135F

Infectious and Epidemic Disease in History

Department of History
University of California, Irvine
 Instructor:    Dr. Barbara J. Becker

Week 5.  Carnalities "All in the Name of Science" from The New York Times (July 30, 1972) by Jane E. Brody

It was a scientific experiment.  For 30 years Federal health officers allowed 400 poor black men known to have syphilis to go untreated despite the discovery that penicillin could cure their devastating disease. The study, which began in Tuskegee, Ala., in 1932 (ten years before penicillin) to determine the course of untreated syphilis, has raised once again a major dilemma for medical research that concerns the ancient issue of means and ends.  Assuming that some experimentation on human beings is necessary to medical progress, how can these studies be performed in a way that does not violate the basic rights of man? Ironically, the Tuskegee Study, as it is called, was begun in the year Hitler came to power.  It was Hitler's atrocious "experiments" done in the name of medical science which led after World War II to the promulgation of the Nuremberg Code, a series of ethical guidelines to be applied to all human experimentation.  It was ignored in the Tuskegee research. None of the men in the study were ever treated for their disease, and at least seven eventually died of the late effects of syphilis.  Even before penicillin, none of the patients were given the admittedly toxic therapy of the day -- injections of metals like arsenic, mercury or bismuth -- to see if they fared any better or worse than those untreated.  The study's subjects may never have been told in terms they understood what was wrong with them. One of the study's 74 survivors, Charles Pollard, an intelligent although uneducated farmer in Tuskegee, told a reporter, "they never mention syphilis to me -- not even once." The ethics of the study would have been questioned regardless of who the subjects were, but the fact that Federal doctors had selected poor, uneducated men -- and not one of them a white man -- further inflamed the issue.  As one white Southerner remarked, "The worst segregationist in Alabama would never have done this." Even with a score of proclamations, codes, declarations, statements and guidelines formulated since the Nuremberg code that are now supposed to be applied to all human experimentation, many questionable studies have been done in recent years and, to loud cries of "human guinea pigs," several have become embroiled in public controversy.  Almost without exception, they involve members of minority or disadvantaged groups. Eight years ago, as part of a study of immunity to cancer, a leading New York cancer specialist injected live tumor cells into elderly chronically ill patients without ever telling them in plain English what they were being given and why.  The researcher, Dr. Chester Southam, was found guilty of "unprofessional conduct" by the state Board of Regents.  Fortunately, nothing went awry in the subjects, all of whom rejected the tumor cells. Nearly 400 poor women -- most of them Mexican-Americans who had already borne many children and had come to a San Antonio family planning clinic for contraception -- were enrolled in a study a few years ago to determine whether oral contraceptives did in fact cause psychological changes.  All of the women were given identical-looking drugs, most of them active contraceptive agents.  But 76 women received a "dummy," or placebo drug.  Seven pregnancies occurred before the study was ended, six of them in the placebo group. In 1967, coercion was charged in conjunction with a study in which live hepatitis virus was injected into mentally retarded children at Willowbrook State Hospital in Staten Island.  Parents, who were said to have a poor understanding of the study, were allegedly being forced into consenting to their children's participation by way of getting them into the crowded hospital. The controversy dissipated after changes were made in the consent procedure and the medical rationale was thoroughly explained.  But to this day, many scientists are still objecting to the use of mentally defective children in research, subjects who themselves cannot possibly give informed consent to what is being done to them. The question of informed voluntary consent has been raised repeatedly regarding research on prisoners, who many believe are under a subtle form of coercion -- the hope for a shorter term, earlier parole, easier duty -- when they agree to be subjects in medical studies.  Three years ago, this newspaper exposed an extensive network of highly questionable studies of drugs and donations of blood plasma in Southern prisons.  Many prisoners were stricken with serious illnesses and some of them died.  All were given substantial monetary rewards for their participation, and thus many failed to report illness for fear they would lose their only source of income. In the last four or five years, concern over the ethics of human experimentation has mounted.  Nearly every issue of the leading medical journals contains some comment on the subject and a number of physicians and ethicists have put together book-length discussions. In reading them, one thing becomes clear -- even among the most concerned and conservative, there is no universal agreement on what is and what is not an ethical experiment.