Written by Clay Smith
Spoon Feed
We need to understand our recent history. The syphilis study is a story we must tell, internalize, and learn from so we won’t make the same mistakes again.
Why does this matter?
This paper makes me unspeakably sad. To be truthful, I was hesitant to read it, because I knew I would need to look closely at the evil of what happened. But if we don’t learn from our mistakes, we will make them again. Many of our readers will have already studied this tragedy in depth. If you haven’t read much about it, I am going to make a strong recommendation. Please read this free article in full. We need to know, not just at a high level that this study happened; we need to know the details. And we also need to know that at the same time, Guatemalan patients were deliberately infected with sexually transmitted pathogens by some of the same investigators. We will focus on how to avoid these mistakes in the future – the lessons learned from these stories.
An anguishing chapter of our history
This article tells the story of the Public Health Service (PHS – precursor of the CDC) syphilis study, in which for 40 years (1932-1972) African-American men with syphilis from Macon County Alabama had effective treatment withheld so the researchers could follow the natural history of the disease, all the while deceiving the participants that they were receiving effective treatment. It also tells the story of some of the same investigators who intentionally infected Guatemalan inmates, prostitutes, and psychiatric patients with syphilis and gonorrhea to ostensibly learn how to prevent transmission. The PHS syphilis study results were published as 15 articles in top-tier journals over 37 years, and no one ever wrote a letter or commentary questioning the ethics. Only when a young social worker, Peter Buxtun, was asked to interview the participants, did the dubious ethical nature of the study come to light. It is easy now, with the benefit of hindsight, to see the evil of this. We all think we would have done better. But so many physicians, like you and me, were involved with or read these studies and didn’t speak up. How did this happen?
Here are some lessons we can learn.
- Character and conscience – each individual has to listen to his or her own conscience and have that conscience informed with what is true. Character matters. Let’s be people who do the right thing.
- Courage – Peter Buxtun was a 29 year old social worker, yet he stood up against physicians, celebrated researchers, and wrote letters to the PHS that he knew would get him in hot water.
- Learn from history – For the final 25 years of the syphilis study, the Nuremberg Code had been widely disseminated, but the investigators thought it was for “barbarians” and didn’t see themselves in it.
- Informed consent – Senate trials about this study led to IRBs, informed consent, and revolutionized research ethics. We have a duty to ensure our patients know what is happening to their bodies.
- Protection of the vulnerable – We have a special obligation to protect vulnerable populations. There is a God. He sides with the vulnerable. We should too.
- Beware of racism – It is no coincidence that the syphilis study was performed on 600 Black men. It is no coincidence that the Guatemalan study was done outside the U.S. among vulnerable people groups.
- Rationalization – The investigators told themselves a lie – that they were doing a good thing with this study – taking advantage of an unprecedented opportunity to study the natural history of a disease.
- Lack of moral imagination – When we are able to imagine ourselves in another person’s place, it becomes clearer whether our actions toward them are right or wrong. We must use moral imagination as we make ethical decisions.
- Beware deadeners of moral imagination, notably: “groupthink, tribalism, and obedience.”
- Take ownership – To our shame, Vanderbilt’s Dr. Rudolph Kampmeier blamed the victims, stating that they should have sought out penicillin for their syphilitic aortitis. However, the victims were told they were getting expert treatment from the finest physicians representing the U.S. government. No, we won’t blame the victims. We need to own our responsibility. The authors argue it should not be called the Tuskegee syphilis study, rather the Public Health Service Study of Partially Treated Syphilis, as many of the men had taken a form of penicillin for other ailments by the end of the study.
- Think! – A big part of what went wrong is that the myriad physicians who took part in or read the study over a 40-year span didn’t stop and think critically about what they were actually doing or reading. And if they did, they let their conscience become seared.
- Failure to act – When we have knowledge and education, an informed and sensitive conscience, and power to act – yet don’t, that is what allows evil to continue.
Source
Fiftieth Anniversary of Uncovering the Tuskegee Syphilis Study: The Story and Timeless Lessons. Am J Respir Crit Care Med. 2022 May 15;205(10):1145-1158. doi: 10.1164/rccm.202201-0136SO.
