The Tuskegee Experiment II (From Truth-The Hemorrhage of Pigs!)
Tuskegee Syphilis Experiment PART II
Tuskegee syphilis experiment
The deliberate failure to treat a group of male Negroes in Macon County (near Tuskegee), Alabama who had syphilis begun in 1932 and ended, by unfavorable publicity, in 1972. This experiment is difficult to discuss, because so much was wrong with it. In my opinion, there are three major mistakes. Page citations are to Bad Blood by James H. Jones, a historian and scholar in bioethics.
- The U.S. Public Health Service (PHS) began using penicillin to treat syphilis in 1943 (p. 178) and penicillin became generally available in 1953 (p. 211). Despite this safe and effective treatment, which would have halted the progression of syphilis in the subjects, penicillin was deliberately withheld from the subjects. Not only did the PHS not give penicillin to their subjects, but the PHS (1) repeatedly distributed lists of names of subjects to local physicians and instructed the physicians not to give penicillin to these subjects (pp. 144-45, 162-63) and (2) supplied sham “treatments” (e.g., aspirin at p. 147, 160) to subjects, in an attempt to discourage subjects from seeking treatment elsewhere. The failure to treat this communicable disease violated Alabama law. (pp. 178, 212) In 1950-51, the PHS knew “that we have contributed to their ailments and shortened their lives.” (p. 182) In the 1970’s, the PHS offered the pretexual and lame excuse that penicillin would have harmed the participants if it had been given (pp. 8, 195), but when penicillin was given in 1973, there were no adverse reactions (p. 215). If, indeed, there were legitimate doubts about the safety and efficacy of penicillin in patients with long-term syphilis, administration of penicillin to these subjects would have made a worthy experiment in the late 1940’s or early 1950’s.
- Dr. Vonderlehr, of the PHS, practiced a fraud on the subjects by offering a painful lumbar puncture as a “special free treatment”, when, in fact, the procedure was purely diagnostic and only for the benefit of the researchers.
- The subjects were not informed that they had syphilis (pp. 71-74, 219). Admittedly, informed consent would be extraordinarily difficult, because of the lack of education of the subjects: most were illiterate and many did not know their last name (pp. 4, 218). One of the best educated subjects had completed only eight years of school. To the extent that the subject’s lack of education made informed consent impossible, these people should never have been allowed to suffer for the benefit of the physicians. It would have been a different matter if the subjects had been treated benevolently, for example, given penicillin prior to 1954.
To me, the most important question about the Tuskegee experiment is:
“Why was this experiment begun and continued?”
The project was begun in 1929 as a syphilis control program, using the standard therapy of 1929-33: a series of at least twenty IM injections of arsenic compounds, supplemented by topical applications of mercurial ointment. (pp. 45-90) However, there was not enough money for full treatment, despite the application of the PHS to private foundations. The subjects received only eight injections, which cured only 3% of them (p. 119).
There was a very high incidence of syphilis among Negroes in Macon County: 36%, which should be compared to the national average for Caucasians of only 0.4%. Given that these black men were living in distressing poverty (pp. 61-62, 83, 107, 201) and ignorance, it was easy to get them to follow orders from white physicians. When it was not financially possible to treat these subjects, the physicians may have looked for other things that they could do with this docile and relatively immobile group of people. In 1933, the long-term complications of syphilis were well known in Caucasians, but the common view amongst physicians was that Negroes responded differently to disease than Caucasians. So, apparently, the physicians decided to study the progression of untreated syphilis in Negroes, ending only when all of the subjects had been autopsied. I say “apparently”, because with all of the bureaucratic obfuscation in the 1970’s, it is not clear what the motivation really was in 1933.
I get the impression that the PHS saw these subjects as a wonderful opportunity for an experiment, when the PHS’s first choice – a treatment program – was denied for lack of financial support, they found another experiment to do with this group of subjects. Support for my view is given by the continuation of the experiment in 1951: “the widespread use of … [penicillin] had practically eliminated the possibility of finding another large group of syphilitic patients”. (p. 179)
Given the unethical aspects of this experiment, why was it allowed to continue until stopped by public outcry in 1973? Apparently, the long-term experiment was never seriously questioned – as a matter of bureaucratic inertia – since it had continued for such a long time and was allegedly valuable. Further, when new managers were appointed, these new managers were reluctant to rescind decisions of their mentors. (p. 178, 180)
Bad Blood (at p. 190) alleges that the first physician objected to the experiment only in 1965. In 1966 a social worker at a PHS VD clinic in San Francisco objected to the study, and, in 1972, he tipped a reporter at Associated Press. (pp. 191-193, 203-205). The initial reaction of the PHS was that they had a public relations problem on their hands, but they had done nothing unethical. (p. 201) Remember, the Tuskegee experiment was no secret among physicians who worked on sexually transmitted diseases: results from this experiment were published in medical journals. I think it remains an important and unanswered question of why the entire medical establishment was so blind to ethics for more than forty years.
Other points of Tuskegee experiment
From the viewpoint of 1996, it is shocking that women were omitted from the study. But, by not treating the men in the study and by not informing the men of the nature of the disease, the PHS permitted many women to become infected with syphilis and many infants to acquire congenital syphilis. (pp. 104, 165, 215) Around 1930, 62% of the men in the study had congenital syphilis (p. 76), so the PHS simply allowed the disease to continue, nonetheless, one would expect better of the PHS.
A study of nearly 2000 untreated syphilitic in Oslo, Norway from 1891-1910 had been published and a follow-up study of them was published in 1929. (pp. 10, 92-3, 167, 183) Why did the PHS need to repeat the Oslo experiment? The common view amongst physicians in the 1930’s was that Negroes responded differently to disease than Caucasians.
Some commentators mention that the PHS paid for the subjects’ funeral expenses as a way of inducing consent to autopsy. I see nothing wrong with such compensation.
Finally, despite the suffering of the participants, it is uncertain how much valid, new medical knowledge was published as a result of this study. A 1933 review by the American Heart Association said the results of X-ray examinations of syphilitic hearts had “very little, if any, value”. (p. 139) No one knew the exact number of subjects. (p. 181) Twelve of the two hundred controls acquired syphilis in the first six years of the study. (p. 176) Some of the subjects may have received penicillin for other infections. (p. 202) The autopsies were conducted until 1952 with “high-grade Neanderthal equipment”. (p. 184) And, of course, these supposedly untreated subjects had received some treatment in the 1930’s, which cured about 3% of them and had unknown effects on the progression of disease in the remainder. (pp. 119, 131, 173-76, 182, 202) I am also concerned that chronic malnutrition might induce pathologies of comparable severity to partially treated syphilis. So, in the end, this ghastly experiment tells us nothing about untreated syphilis. And since penicillin is an effective cure for syphilis, we have no reason to know about the progression of untreated syphilis.
There was also little valid medical knowledge from the so-called experiments in Nazi concentration camps. This parallel raises the question “Are unethical studies also likely to be invalid?”. While I acknowledge that technical skills in biology and statistics are entirely different from knowledge of morality and ethics, I nevertheless maintain that a competent scientist is zealous about both technical and ethical concerns. In particular, I don’t see how a physician can work amongst suffering people without being aware of, and concerned about, their suffering. The moment that the physician sees subjects (as if they were a inanimate object), instead of patients or people, the physician has lost some of his humanity. If the physician can’t see suffering, how much else can he not see?
At least 28, perhaps more than 100, of the 399 subjects had died from syphilis. (pp. 1-2) Litigation against the PHS, et al., was settled in Dec 1974, 18 months after suit was filed, for $ 37,500 to each surviving participant and $ 15,000 to each decedent’s estate. (p. 217) As yet another piece of exploitation of the subjects, the attorney who brought the suit received 1/8 of the settlement, which gave approximately one million dollars to the attorney – quite a nice income in 1974 for a case that did not go to trial. (p. 217) Interestingly, this black attorney included neither any predominantly black institution nor any black physicians or nurses as defendants (pp. 216), although the Tuskegee Institute and a number of black physicians had been involved in the experiment, which was operated from the beginning until 1965 by one black nurse. While one might be reluctant to blame a black nurse for following orders of white physicians, especially during the 1930’s and 1940’s (pp. 151-169), “following orders” was not an acceptable excuse for German war criminals.
Truth-The Hemorrhage of Pigs! 