Last December, news broke that the Centers for Disease Control and Prevention had awarded $1.6 million to a Danish vaccine research group to study the effects of the hepatitis B vaccine on infants in the West African nation of Guinea-Bissau. The proposed five-year study compared outcomes between infants vaccinated at birth and those vaccinated at six weeks of age. As a medical student and researcher, I was shocked by the brazen inequity of the trial.
Randomized controlled trials have already demonstrated superior outcomes when the hepatitis B vaccine is administered at birth. More troubling, however, was the setting of the study. Guinea-Bissau is a highly endemic country for hepatitis B, where vaccination coverage lags behind global averages and roughly 60 percent of the population lives in poverty.
The global health community decried the trial, and study officials appeared to walk back claims that it had been fully green-lit. Now the trial is officially on pause. But the saga continues. Earlier this year, the World Health Organization issued a statement that chastised the involved parties.
The milquetoast nature of the statement — with its measured language and nonexistent call to action — and the broader absence of real accountability have nagged at me for weeks. It sent me down a rabbit hole into the history of America’s medical experimentation abroad, especially research conducted under the cloak of ostensibly vetted randomized controlled trials.
What I found was shocking. In the 1930s, patients in Puerto Rico were subjected to experiments testing human tolerance to chlorine and mustard gas. In the 1960s, impoverished women in U.S. territories were enrolled in high-dose contraceptive trials with limited informed consent. And in Guatemala in the 1940s, more than 1,000 people — many from society’s margins — were deliberately infected with syphilis, gonorrhea, and chancroid to study the natural course of disease.
That latter experiment is often compared to the Tuskegee study — the infamous U.S. Public Health Service experiment conducted between 1932 and 1972, in which officials deliberately withheld antibiotics from Black men with syphilis to observe the long-term effects of untreated disease. The recently paused hepatitis B trial has similarly been likened to this stain on American history. In fact, Tuskegee is invoked almost reflexively whenever medical inequities involving marginalized communities — often people of color — come to light.
But this instinct to reference Tuskegee can obscure a more uncomfortable truth: These injustices are not relics of the past. The hepatitis B trial is only the tip of the iceberg. Modern randomized controlled trials frequently rely on marginalized populations abroad. Since the 1990s, faced with rising costs and regulatory hurdles at home, pharmaceutical companies and contract research organizations have increasingly moved trials overseas, where they are cheaper to run, recruitment is easier, dropout rates are lower, and treatment-naïve patients are more readily available.
This has led to several scandals in the past few decades: Pfizer’s 1996 testing of an experimental meningitis drug on children in Nigeria, with disastrous and fatal results; clinical trials in the 1990s of new HIV medications that used placebos rather than zidovudine, the gold standard of care; and the influx of pharmaceutical companies that descended on South Africa and other HIV-endemic nations to test new drugs, often among largely underserved populations with limited consent and understanding.
But much to my embarrassment, I didn’t know about any of these breaches of ethics — ranging from experimentation in U.S. territories in the 20th century to the modern underhanded dealings of pharmaceutical companies — until the recent hepatitis B trial piqued my interest. This, despite the fact that I will be wrapping up my foundational medical education and heading to residency in a year. While I am sure my own naivete contributed to my surprise, I doubt I am alone in this rude awakening. How else could the hepatitis B trial have caused such a ruckus?
My medical school prides itself on its focus on health equity, yet — like many institutions and media outlets — it has fallen into the habit of invoking Tuskegee as shorthand for the entirety of medical abuses. But this history does not begin and end with Tuskegee. The belief that certain bodies are somehow more expendable — more durable, more suitable for risk — has quietly sustained American biomedical advancement for decades, with consequences that continue to reverberate.
As a fourth-year medical student embarking on a career in two intertwined domains — clinical practice, encompassing the diagnosis and treatment of patients, and research, including the appraisal of study design and methods — I believe this point must be emphasized beyond a cut-and-paste PowerPoint slide on the Tuskegee experiment. Tuskegee is important, to be absolutely clear. Yet for it to be the only wrongdoing medical students are taught obscures a central lesson of Tuskegee: that medical racism is more pervasive, closer to home, and more contemporary than we often acknowledge.
Medical schools and institutions must be at the forefront of teaching about the inequities that persist to this day — and equally at the forefront of rebuking studies like the hepatitis B vaccine trial. Some may argue that medical curricula are already overstuffed and straining at the seams. But it takes only a few brief examples, a matter of minutes, to pierce the illusion of equity in modern research and health care; it did for me, at least. That is not too much to ask of students, our teachers, or the institutions entrusted with launching us into our careers as physicians, researchers, and healers. I, for one, know that armed with this knowledge, I will be more careful when appraising research and more inclined to ask, “Who benefits?” — an extra step essential to patient-centered medicine.
Uzma Rentia is a medical student at George Washington University who’s doing research at Mass Eye and Ear.
