Lessons from the Tuskegee Study

There will never be another Tuskegee. There will always be another Tuskegee.

NOTE: On Thursday, September 8, 2022, 7:00-8:30 PM EDT, FAIR in Medicine will host a webinar, “What Can We Learn from Tuskegee? A Discussion on Pro-Human Medicine.” REGISTER HERE to attend.

The Tuskegee Experiment (formally, the “Tuskegee Study of Untreated Syphilis in the Negro Male”) is “arguably the most infamous biomedical research study in U.S. history.” But the biggest error one can make is to view this sordid tale as bygone history. It is, instead, a cautionary tale for our own time. Infamy is made of publicity and perception, not uniqueness, severity, or obsolescence. Human rights abuses in the name of science stretch back to ancient times, and Tuskegee was only one of a long list of contemporaneous outrages. Two common threads marked many of these abusive episodes: the scientists viewed people as collectives rather than as individuals, and information flows were purposefully constricted. In 2022, these threads are wrapped about our throats.

William Faulkner famously said, “The past is never dead. It’s not even past.” Fittingly, Faulkner’s Oxford, Mississippi shared the same race-haunted terrain as Tuskegee, Alabama. Faulkner wrote movingly of sharecroppers while the U.S. Public Health Service (PHS) and the Centers for Disease Control and Prevention (CDC) abused actual sharecroppers at Tuskegee.

What was the Tuskegee Experiment?

For a brief recap, Tuskegee researchers observed the effects of untreated syphilis on hundreds of African American men—mostly impoverished sharecroppers. The ethical violations were legion. The experiment’s intended six-month timespan swelled to forty years (1932 to 1972) until public revelations suddenly forced its termination. Researchers never told subjects that they had syphilis, saying, instead, that they would be treated for “bad blood.” In fact, they were merely observed, and not treated. By the 1940s, penicillin had become a standard and effective treatment, but Tuskegee researchers left their subjects untreated for decades after. 50 years later, Tuskegee still engenders distrust of the medical community among African Americans. In 1997, President Bill Clinton formally apologized for Tuskegee.  

Tuskegee was not the work of racist monsters, like Josef Mengele’s sadistic “experiments” in Nazi Germany. Tuskegee was ostensibly aimed at benefiting African Americans. Housing the project at the historically black Tuskegee University was seen as an opportunity for African American researchers to participate in important medical inquiry.

Antecedents for Tuskegee’s abuses stretch back for millennia. Herodotus (c. 484—c. 425 BCE) described what may have been history’s first psychological experiment—the investigation into the origin of language conducted by the Egyptian pharaoh Psamtik I (aka Psammetichus), who reigned 664–610 BCE. Psamettichus had two newborns carried into the wilderness with instructions that they never hear human speech. He wished to know whether language was inherent or acquired, and, if the former, which language was primal. Eventually, one child uttered something that sounded like “bekós”—the word for “bread” in Phrygian. From this, Psamettichus concluded that Phrygians preceded Egyptians and that their language was mankind’s original tongue. The investigation had some genuine scientific basis, as we now know from studies of idioglossia—personal languages spoken by individuals isolated early in life. [Herodotus wasn’t always reliable, but we at least know from this account that the idea of cruel human experimentation was extant 2,500 years ago.]

The Tuskegee Experiment wasn’t unique in its era. In 1880, Alexander Graham Bell helped persuade the Second International Congress on Education of the Deaf (the “Milan Conference”) to institute a worldwide ban on the use of sign languages in schools for the Deaf and to fire all those schools’ Deaf teachers. “Oralists” like Bell believed Deaf students ought to use lip-reading and oral communication. For the better part of the next century, Bell’s grand experiment proved nearly as destructive for many students as Psammetichus’ experiment would have been to the unfortunate children described by Herodotus. In 1884, Bell summarized his views in his pseudoscientific polemic, “Memoir Upon the Formation of a Deaf Variety of the Human Race.” In 2010, the 21st International Congress condemned their predecessors’ actions.

Whence eugenics?

In England in 1883, Sir Francis Galton coined the term “eugenics,” by which he meant the snobbish idea that elites should marry elites and have large families to attain numerical superiority. In the U.S., though, this idea gave way to an ideology that believed “unfit” or “socially inadequate” people should be excised from the population. In 1911, the Carnegie Institute issued its "Preliminary Report of the Committee of the Eugenic Section of the American Breeder's Association to Study and to Report on the Best Practical Means for Cutting Off the Defective Germ-Plasm in the Human Population." The report described the search for “a remedy [for] cutting off the supply of defectives.” Suggestions included sexual segregation during the reproductive years of “defectives,” sterilization, restrictive marriage laws, polygamy, forced contraception, and euthanasia. A popular college textbook, Applied Eugenics, stated that, "From an historical point of view, the first method which presents itself is execution … Its value in keeping up the standard of the race should not be underestimated." Fortunately, America never went that route, though American eugenics inspired Nazi eugenics, which ultimately metastasized into the Holocaust. However, five years before Tuskegee began, the U.S. Supreme Court’s 1927 Buck v. Bell ruling greenlit the eugenic sterilization of over 70,000 Americans—a history told in a haunting documentary, The Lynchburg Story.

In 1951, researchers at Johns Hopkins University excised cervical cancer cells from an African American patient, Henrietta Lacks, without her consent or that of her family. (Medical ethics at the time required no such consent.) Her cell lines, dubbed “HeLa cells,” were unusually resilient and still remain extant and central to biomedical research 70 years later. The ethical questions related to Lacks are legion. Stunningly, in the 1960s, several researchers at Brooklyn’s Jewish Chronic Disease Hospital injected HeLa cells without consent into elderly patients to see whether they developed cancer.

What were the common threads?

Ethical breaches associated with Bell’s imperatives for the Deaf, eugenic sterilization, the Tuskegee Experiment, various HeLa experiments, and similar efforts shared a common characteristic—a view that collective good (however defined) outweighed the sanctity of individual lives. In 1910, the American Medical Association’s Flexner Report, which reconfigured the structure of medical education, anticipated traditional medicine’s focus on individual patients giving way to public health’s concern with collective good. The author, Abraham Flexner, saw the physician as a "social instrument... whose function is fast becoming social and preventive, rather than individual and curative." In 1912, Harvey Jordan, a physician and, later, dean of medicine at the University of Virginia, told the First International Eugenics Congress: “Medicine is fast becoming a science of the prevention of weakness and morbidity; their permanent not temporary cure, their racial eradication rather than their personal palliation.” (To avoid misinterpretation, note that “their” in Jordan’s quote refers to “weakness and morbidity.”)

Paul Lombardo, a scholar on the history of eugenics, wrote, “The expansive reach of public health law is justified by the government’s ‘police power,’ the inherent authority to adopt laws to protect health, welfare, and morals, and an exception to the usual expectation that states should not interfere with the property rights or the liberty and bodily integrity of citizens.” Public health’s enthusiasm for social engineering, he notes, led to the public health sector’s enforcement roles in preventing marriage between persons with epilepsy, prohibiting interracial marriages, rounding up citizens for sterilization, investigating individuals’ racial ancestry, barring immigrants, as well as the Tuskegee Experiment.

The other common thread in many of these ethical breaches in biomedical research and policy was an illiberal suppression of information flows. Eugenics maintained its respected position longer than otherwise might have been the case, thanks to the stifling of academic dissent. Economic historian Thomas C. Leonard writes of the proto-cancel culture that prevailed early in the century: “Until the late 1920s, American geneticists supported eugenics or kept their reservations private while welcoming the funding and publicity eugenics generated.” Publicity surrounding the Nazis’ eugenic programs helped to discredit eugenics in the United States. In 1964, newspaper accounts and protests by other physicians helped end the cancer experimentation at Jewish Chronic Disease Hospital. Publicity surrounding the Lacks case led Johns Hopkins University to reconsider the ethics surrounding the case. And it was a burst of unwanted publicity that ended the Tuskegee Experiment.

What can we today learn from Tuskegee?

We today do not inhabit an enlightened world where the ethical breaches described above are merely quaint relics of a benighted past. Collective good over the sanctity of individual lives may be again on the ascent. In 2021, the American Medical Association and the Association of American Medical Colleges resurrected the Harvey Jordan-Abraham Flexner vision in their Advancing Health Equity: A Guide to Language, Narrative and Concepts. This document implored doctors to “shift the narrative … from the traditional biomedical focus on the individual and their behavior to a health equity focus on the well-being of communities.” As technology and bioethics researcher Christine Rosen said of the document, “[T]he tools of the medical profession are to be turned not to better health care, but to social justice.”

Consider California’s long history of forced sterilizations—which numbered over 20,000. One of the victims was Charlie Follett, age 15, sterilized in 1945 because his parents were alcoholics and couldn’t care for him. California continued sterilizing female inmates, mostly Black and Hispanic, sometimes without their knowledge, until 2014—87 years after Buck v. Bell.

Information flows are also stifled in our time as they were in the time of eugenics and Tuskegee. In 2021, outraged students forced MIT to cancel an address by University of Chicago geophysicist Dorian Abbott because he and a colleague had criticized diversity, equity, and inclusion initiatives that “[treat] persons as merely means to an end, giving primacy to a statistic over the individuality of a human being.” During the COVID-19 pandemic, social media platforms regularly restricted “misinformation.” Twitter, Facebook, and other platforms regularly suppress disfavored viewpoints and expel offenders who dare contradict the favored ideology. Universities and academic journals are likewise punishing those who fail to March in philosophical lockstep.

It is important to recall that most of the unethical behavior here was only regarded as unethical in hindsight. During 19 years as a professor at medical centers, I taught these difficult cases to my students, who were mostly mid-career doctors, nurses, and other medical personnel. I asked each cohort, “What are you and others doing today that might leave your great-grandchildren appalled a century from now?” I stressed that I wasn’t asking them to condemn any practice with certainty, but merely to consider possibilities. Some thought abortion policies (either pro or con) might be viewed with horror a century hence. Other examples from those classes and from more recent discussions included: Iceland’s near-total elimination of children with Down’s Syndrome, gender reassignment therapy for children, COVID-related school closures and lockdowns, cloning, assisted suicide.

Which of these will be regarded with shock a century hence? As I told my students, “Ask me in a century.” A colleague recently said, “There will never be another Tuskegee Experiment” My response was, “There will never be another Tuskegee Experiment, but there will always be another Tuskegee Experiment.” That is, we’re unlikely to repeat the specifics of Tuskegee, but we’re guaranteed to engage in parallel ethical breaches. The best preventatives available are to (1) treat humans as individuals and not as collectives, and (2) to let the sun shine on research and discourse by avoiding secrecy and by tolerating dissent.