The Ugly Truth About Medicine & Black History
“Of all the forms of inequality, injustice in health care is the most shocking and inhumane.”
– Martin Luther King, Jr.
I’m not feeling Black History Month this year. The annual observance, meant to ensure the contributions of African-Americans are not forgotten, was founded by Carter G. Woodson in 1926 as Negro History Week. It often relies on a curated selection of African-American greats to celebrate what is essentially American history. However, the richness of Black history, its hardships and triumphs, is interwoven into American history and attempts to separate the two must end.
Exhibit A is my profession of medicine. I know the repugnant elements were surgically excised from the hundreds of hours I spent buried in medical textbooks, sitting through lectures, and attending conferences. Pull back the curtain on the evolution of American medicine and you will find work rivaling that done by the Nazis during World War II – a regime whose inhumane medical experimentation we readily loathe, while disavowing the antecedent history in our own country.
The Nazis Learned from Us
The narrative about involuntary medical experimentation on African-Americans usually begins and ends with the Tuskegee Syphilis Experiment. Officially titled “The Tuskegee Study of Untreated Syphilis in the Negro Male,” from 1932 to 1972 medical researchers from the U.S. Public Health Service denied 600 men therapeutic penicillin to allow study of the natural progression of latent syphilis. Not only was their health compromised, but that of their partners and children who were predictably exposed to the disease. But Tuskegee was nothing compared to many lesser known projects. Consider these:
- Surgery on enslaved people: From 1845 to 1849 the “Father of Modern Gynecology” earned his fame by developing a revolutionary procedure to repair vesicovaginal fistulas – a pathological connection between the bladder and vagina resulting in urinary incontinence. Enslaved women underwent operations, some dozens of times, against their will. Denied anesthesia, they were physically restrained while the procedure was performed through their screams of agony. White women with the same affliction were spared this operative therapy until the technique was perfected.
- Eugenics: The post-Civil War practice in the U.S. of controlled breeding through forced sterilization was so successful that Nazi physicians would cite the work of American researchers as the inspiration for experiments performed at concentration camps during World War II. Black women were the prime target in the South, and the practice was so prevalent it became known as the “Mississippi appendectomy.”
- Whole body irradiation: From 1960 to 1971 at the University of Cincinnati, nearly 100 cancer patients were subjected to intense, non-therapeutic irradiation without their consent. Cold War fears prompted this Pentagon-funded study to determine how much radiation the human body could withstand in the event of a nuclear attack. All of the patients were poor, most were black, and nearly 1/4 died of radiation poisoning within one month of exposure. The physician who led the experimentation was later awarded the Gold Medal by the Radiological Society of North America, its highest honor.
The Exploitation Continues Today
African-Americans still serve as a ready supply for modern-day medical research. Identified with idioms like “urban poor” or “socioeconomically disadvantaged,” the era of involuntary experimentation has evolved into a system of waiver of consent used as a procedural means to circumvent obtaining informed consent.
Informed consent is the foundation of the Nuremberg Code which states “the voluntary consent of the human subject is absolutely essential.” In short, medical researchers have a legal and ethical obligation to respect the fundamental right of patients to decide what treatments they will receive. It has four components:
- Disclosure – I must tell you what will be done and explain the risks and benefits.
- Capacity – I must ensure you have the ability to consent (e.g. minors cannot consent).
- Competency – I must ensure you comprehend what I say.
- Voluntary – You must consent of your own free will.
However, waiver of consent allows medical research, under strict guidelines, without obtaining informed consent from enrollees. During my career, I have seen waiver of consent employed to enroll entire communities of color for the sake of medical research. In fact, this controversial, and in my opinion inhumane, practice often takes center stage at the medical conferences I attend to stay abreast of the latest advances in my specialty. Continuing the tradition of researchers past, the results of these studies are largely shielded from the public we serve.
Diversity in Medicine Matters
The United States is home to some of the world’s premier medical institutions, and continued therapeutic advances require experimentation. However, we must respect the humanity of the people living in communities imprisoned by systemic racism and vulnerable to medical exploitation.
This is one of many reasons why racial and ethnic diversity in medicine matters. The more the community providing care represents the community seeking care, the more empathy, awareness, and trust is available to them. In absence of that, what remains is the potential for abuse and exploitation. The centuries of involuntary medical experimentation on unwitting African-Americans cannot be dismissed, and it is time that it ends.
Black History is American History
So, I join those who decry Black History Month. Not because it isn’t relevant, but because one month to acknowledge our humanity and suffering is not enough. One month to celebrate the contributions and sacrifices of scores of African-Americans to the success of America is not enough. Black history is more than slavery and the Civil Rights Movement. Black history is American history.