A case of tertiary syphilis
The Tuskegee experiment was one of the most regrettable incidents in the history of medicine in the U.S. Conducted by the U.S. Public Health Service, it started in 1932 as a six-month study of the natural course of untreated syphilis in 399 black men and 201 controls. It took on a life of its own, lasted forty years, and was only terminated in 1972 after whistleblowers sparked a public outcry.
Patients who could have been cured were denied effective treatment and most of them suffered the complications of advanced syphilis and died before their time. 40 of their wives contracted syphilis, and 19 children were born with congenital syphilis.
The doctors were accused of racism and genocide. They were compared to the Nazi doctors whose unethical experiments cruelly tortured and killed prisoners in Hitler’s concentration camps. Many myths were circulated. It was widely believed that the doctors injected patients with syphilis; they did not. It was assumed that doctors told patients they had syphilis; they did not. It was widely believed that no treatment was given; in reality, most patients did receive some treatment, although it was inadequate. It was often believed that both men and women were enrolled; but the study was restricted to black males who had advanced syphilis and were in a specific age group, excluding younger men. The reasoning was that it was important to know when patients contracted the disease; men usually had an identifiable, memorable skin lesion, while women often did not. And they needed to be able to follow patients who had been infected long enough to develop late complications.
When I first heard of the Tuskegee study, I was appalled. I couldn’t imagine what those doctors were thinking, or how they could sleep at night after participating in such an unethical experiment. As I learned more, especially from reading the book Bad Blood by James H. Jones, I realized the truth was far more nuanced than I had realized. I now have a better understanding of what those doctors were doing and thinking; I don’t condone their actions, but I can cut them some slack because I know they were heavily influenced by peer pressure and by the social milieu of their time.
To set the scene
Racial prejudice was rampant, and segregation was in full force. The study subjects were all black and impoverished; the researchers were all white and well-to-do. Conventional wisdom held that blacks were inferior in various ways. The high incidence of syphilis in blacks was attributed to physical inferiority and sexual promiscuity. The effects of abject poverty and ignorance were confused with intrinsic racial traits. Doctors believed that diseases had different effects in patients of different races. They thought blacks were more likely to suffer cardiovascular complications of syphilis and whites more likely to have central nervous system complications.
A study in Oslo, Norway, had examined the natural course of untreated syphilis in white males, but it was a retrospective study pieced together from information about patients who, for whatever reason, had not been treated. The U.S. Public Health Service researchers thought there would be value in prospectively following black males who were diagnosed with syphilis but not treated. Macon County, Alabama, was a convenient place for such a study, with a rural population of isolated, uneducated, illiterate, ignorant, malnourished, desperately poor black sharecroppers who had no access to medical care; many of them had never been seen by a doctor in their entire life. They didn’t know what syphilis was, and the researchers didn’t explain; they just told them the test showed they had “bad blood”. They were promised treatment for their bad blood, free medical care for minor ailments, free transportation to appointments, free meals on study days, and free burial insurance. Since they had no other way to afford medical care or burial insurance, they could hardly refuse. They were initially told the study would last six months and would provide treatment.
As time passed, the researchers lied to subjects repeatedly. They gave them token placebos (aspirin and iron tonics) and let them believe they were getting effective treatment (some subjects had never taken an aspirin before, and they were impressed when it relieved their headaches). They went to great lengths to prevent them from getting effective treatment outside the program. They got permission for autopsies by calling them “surgeries” and making them a requirement for receiving funeral benefits.
They wanted to gather data with spinal taps, but they knew patients often had serious side effects like prolonged incapacitating headaches, and they were afraid the word would get around and other patients would refuse. So they found a way to process a large number of patients at once before the word could spread, and they cynically enticed patients in with a deceptive letter that said “Last Chance for Special Free Treatment”. Some patients didn’t realize that the purpose of the spinal tap was diagnostic; they believed their spine was being injected with curative medication.
Contemporary treatment for syphilis
Apparently the original plan was to treat everyone who tested positive with the standard anti-syphilis drug, Salvarsan, an arsenic-based drug, along with mercury. But the study was only supposed to last for six to eight months, and effective treatment required a full year. The injections were painful, and the treatments were toxic. The side effects were so bad that some doctors discouraged treatment, arguing that the treatment was worse than the disease. Due to the Great Depression, private funding for treatment medications was withdrawn; but the study was continued as an observational study of untreated patients. The partially treated patients were considered untreated for the purpose of the study. So it was never really a valid study of untreated patients; it was hopelessly contaminated by partially treated patients. It never even had a formal study protocol, and it didn’t have an appropriate control group. When subjects in the control group developed syphilis during the study, they were simply transferred to the syphilis group.
When a safer, more effective treatment, penicillin, came along in 1943, it was never offered to study participants; they weren’t even told it existed. Some researchers argued against it to maintain the “untreated” integrity of the study, and some argued that it was new and was not really a good treatment; it might do more harm than good to patients with advanced disease. Some argued that withholding treatment did not injure the participants, because if the study had not existed, the patients would not have had any kind of medical care.
Nurse Eunice Rivers
A black registered nurse, Eunice Rivers (later Eunice Rivers Laurie), played an essential part in getting the study done. She gained the confidence of patients, knew how to talk to them, became friends with them, visited them at home, provided transportation in her own car, and worked hard to locate patients when the researchers lost track of them. She never questioned the study. She believed a nurse’s duty was to not ask questions and to simply carry out the doctor’s orders.
When interviewed years later, she refused to believe the patients had been harmed. She felt it was best to withhold treatment in the 1930s because there were bad reactions and some patients would have died. She wasn’t so sure about the wisdom of withholding penicillin when it became available, even though withholding it was illegal: it violated state laws and the federal Henderson Act of 1943 which required testing and treatment of venereal disease. But when asked what mistakes had been made, her main concern was the lack of informed consent: it bothered her that the doctors never told the patients they had syphilis.
Similarly, the doctors who participated in the program felt they were simple clinicians who were not qualified to evaluate the scientific merits of a study that the expert scientists had said was important and necessary. They simply did what they were directed to do.
Compensation
The victims received a formal apology from President Clinton on behalf of the United States in 1997. The researchers themselves never expressed contrition; they insisted they had acted in good faith. The 74 participants who were still alive were offered free medical care and burial stipends. A lawsuit was settled out of court for $10 million.
Lessons learned
The Tuskegee experiment was a terrible fiasco, but there was a silver lining: one good thing did come out of it. Nothing of scientific value was learned from the study. Nothing that would “prevent, find, or cure a single case”. But there was one very valuable, important result. Due to the public outrage, laws were passed to protect the rights of human subjects in research studies. Today human studies must be approved by Institutional Review Boards. Subjects cannot be denied effective treatment. They must understand the purpose of the study and they must give informed consent. Protection is not perfect, and there will still be abuses, but hopefully none as egregious as the infamous Tuskegee experiment.