"Follow the Science," but Explain and ApologizeNews Abroad
tags: public health, medical ethics, Guatemala, medical history, COVID-19
Susan M. Reverby is a medical historian and author of Examining Tuskegee: The Infamous Syphilis Study and its Legacy (2009) and Co-Conspirator for Justice: The Revolutionary Life of Dr. Alan Berkman (2020).
Poll after poll has shown that the increasing politicization of health information from government agencies is leading a majority of Americans to fear taking a vaccine against COVID-19. CDC guidance on the current pandemic, for example, has been issued and withdrawn, with dubious explanation. Yet all government health agencies make mistakes in a rush often to get the best information to the public. The real issue is what they do with the information once these errors are clear, and what kinds of support or pressures they are getting from higher ups.
A decade ago, on Friday morning, October 1, 2010, the United States federal government at its highest levels apologized to Guatemala for immoral research done by the U.S. Public Health Service six decades before. It is hard to imagine that such honesty would happen now, but it is worth remembering as a potential model for cases when science goes awry. I know because I was the medical historian who alerted CDC officials that I was about to publish an article about this research.
Between 1946 and 1948, U.S. government researchers infected more than 1400 Guatemalans with sexually transmitted diseases in a failed effort to determine if the newly available penicillin might serve as prevention against these infections. Unlike other immoral studies that were hidden in plain sight over the years, this one really was kept secret. This was because U.S. taxpayer dollars went to encourage sex workers to have infected sex with Guatemalan prisoners, and soldiers and mental patients had parts of their bodies scarified so that the inoculums of the various infections could pass into their systems. The reports of the details of the study were never published, but the correspondence and medical records were in the papers of physician John Cutler, who led the study (the papers are now in the Southeast Regional National Archives but then were at the archives at the University of Pittsburgh).
I had examined these archival records because I was the working on a book about the U.S. Public Health Service’s study of “untreated syphilis in the male Negro,” primarily known as the Tuskegee Study (1932-72). One of the myths of the study in Tuskegee is that the men were given syphilis by the government doctors, but this is not true. But then there was this evidence about Guatemala done by a physician who would later work in Tuskegee. I knew the difference between the two studies had to be explained.
I shared my research with David Sencer, the retired director of the CDC, asking him to make sure I had the medical aspects of my yet unpublished paper right. Sencer, immediately understanding the possible backlash against CDC and the Public Health Service when my article came out, asked if he could give my draft to CDC officials. I agreed, because unlike a government employee, no one could stop me from publishing. Government health officials were alarmed enough to do their own research in the archives, and sent my still unpublished paper and their report to the NIH, the Department of Health and Human Services (DHSS), and State Department leadership and the White House Domestic Policy Council. The decision was made to have President Obama call the president of Guatemala and the secretaries of DHSS and State formally apologized. Subsequently, the president’s bioethical commission issued a report about how this study had happened.
In many clinical trials researchers believe they are doing the best science possible to fight a deadly scourge. Those who did the studies in Guatemala, and in Tuskegee too, thought they were doing good science. Although they knew they were on an ethical edge, the researchers on the study in Guatemala, with help from Guatemalan government health officials, thought they had to do this to understand the way to stop the epidemic of sexually transmitted diseases that harmed or killed millions too. They were following the science in their testing, just not letting their unwitting participants know what they were up to. Similarly, the doctors in Tuskegee misled their subjects by telling them they were being treated not studied, but they thought the scientific payoff might be right, and they thought wrongly that syphilis was a different disease in Blacks and white patients.
The need to “follow the science” in making recommendations is not always easy. David Sencer knew this. In 1976, as the CDC director he thought “following the science” and advice of other scientists meant there would be an epidemic of deadly flu like that of 1918. He urged a national vaccination program; but the epidemic never emerged. Sencer was fired for his errors.
There will always be mistakes, rushes to judgment, the weighing of the best way forward, or career or political concerns that interfere. We have the model of firings and apologies when actions and recommendations are wrong. There are ways to give the American people the best possible information to make informed judgments about their own and their communities’ health. Right now, we do not have this. But we should.