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Higher Education Must Educate Americans on the Grim History of Medical Experimentation on Black and Brown People
Posted on September 1, 2021 in Blog Posts
WARNING: Please be advised that some of the details in this story may evoke an emotionally triggering effect on some readers.
As the US grapples with the ongoing COVID-19 crisis, I have watched #AcademicTwitter weigh into the digital discourse about vaccine hesitancy and other public health mandates. From my perspective, the statements and exchanges have been more judgmental than instructive toward those electing not to take the COVID-19 vaccine.
Some exchanges have digressed into frustration. Higher education faculty and staff are worried. They are concerned about themselves, each other, and their families.
I get it.
I have spent several months being frustrated with those who are unvaccinated as more people become sick and die.
Yet, I have waited (and I imagine that I am not the only one waiting) for more medical ethicists and others versed in the US’s history of human medical experimentation to discuss how these terrible circumstances have spurred vaccine hesitancy among BIPOC communities—especially the Black (paywalled) and Latino communities.
And no, I am not just talking about the Tuskegee Syphilis Experiment—an ugly, deadly stain on American history.
I am talking about the court-, higher education-, and government-sanctioned experimentation on Black and brown people that has occurred in the late 20th century and through the modern era.
I have an intimate history with medical experimentation, as I was a subject in a potentially massive experiment that began in the early 1980s.
I kept diaries from the early ‘80s through the early 2000s, burying this secret with me until recently.
The doctor involved was later found guilty of extraordinary human rights violations but was never charged.
In the early 1980s, while undergoing puberty, I began to have cystic acne on my face. My skin physically hurt, and I was deeply embarrassed by it. My mother’s family appeared prone to cystic acne and tried various home remedies on me, including tea tree and lavender oil (now popularized for many home treatments). While some of these remedies helped, they did not entirely curtail my issue. My mom (recently divorced from my father and working two jobs to make ends meet) was unable to afford dermatological treatment for me, which at the time was not covered by traditional insurance plans. So, she took me to a neighborhood medical clinic managed by Temple University.
It was there that I was placed on an experimental drug called Retin-A. Placing complete trust in the university’s medical providers (several of whom were residents), I was administered a high dosage. The staff assured my mom and me that this drug (while brand new) was completely safe and that I would have “beautiful skin.”
My mother did not remember signing any documents that detailed the potential negative impacts of this drug. She merely signed a consent form and followed the doctors’ advisement as we received it for free. I remember the doctors talking about a “Dr. Kligman,” a “brilliant” local doctor who had created Retin-A.
Fast forward several years, and the doctors were correct in their claims. I had great skin and rarely broke out. The cystic acne disappeared.
It was not until my late 20s, while under a Black woman dermatologist’s care, that I learned the hideous truth of what happened with me and possibly thousands of other BIPOC children.
During a routine skin check-up she was complimenting my skin. When she asked me about my skincare practices, I told her that I had been on Retin-A for years.
“What?” She stated, nearly startled. “Oh, wow. You were one of those children.”
“What children?” I asked.
She reached on her shelf and handed me the book Acres of Skin: Human Experiments at Holmesburg Prison by Allen Hornblum, published in 1998. She then shared that the “brilliant” Dr. Albert M. Kligman (d. 2010) who had created Retin-A, and who was educated at Penn State and the University of Pennsylvania, was known to experiment on Black and brown people. His most egregious actions were perpetrated upon Black male prisoners in the 1970s. To the horror of many people, Kligman referred to these men as “acres of skin,” hence the book’s title.
The Black dermatologist added that record-keeping is sparse to non-existent on community health center patients of Retin-A. Yet, she believed that potentially thousands of Black and Latino parents unknowingly allowed their children to be subjects in massive experimentation with Retin-A (paywalled), and that I was possibly one of these children.
“The upside is that you will have great skin for the rest of your life and probably will always have a youthful appearance,” she said. “But we don’t know at what cost. You must stick close to doctors to check your skin and overall health continuously.”
I was stunned. My mom and I cried about it.
My mom carried this guilt with her for the rest of her life.
I became exceptionally committed to health care, going to doctors and getting frequent check-ups. This behavior will never leave me.
Retin-A and its derivative retinol are sold over the counter in various skincare products targeted to women. However, if we trace the history of retinol adoption in the US, this product was not widely accessible until the past decade. Therefore, it appears that approximately two decades of data were collected before retinols were commercialized.
But at what long-term health costs for those of us who started on the drug as preteens?
I think a lot about my ongoing battles with uterine fibroids and whether or not long-term Retin-A usage is at the root of this circumstance. I also think about how Black women disproportionally struggle with fibroids and how unchecked medical experimentation on us from the time we were children could be a factor.
The men subjected to Kligman’s experiments were never paid full reparations. The FDA temporarily sanctioned Kligman, but that was it.
Stories of experimentation on prisoners continue today. An Arkansas doctor is under investigation for administering ivermectin (a drug used to de-worm horses and cows) on prisoners. The Centers for Disease Control and Prevention and the Food and Drug Administration urge people not to use this drug as a substitute for the COVID-19 vaccines by Johnson & Johnson, Moderna, and Pfizer.
Given that the prison population is predominantly Black and Latino, should we continue to speculate why there is COVID-19 vaccine hesitancy among these communities?
And what about the potential under-the-radar, quietly managed experimentation that may be happening under our critical gaze?
It is time for more empathy toward Black and brown people who are hesitant about the COVID-19 vaccine. It is also essential for higher education to take several actions now to help us get through the COVID-19 crisis.
First is to tell the truth about its complicit role in human experimentation. Second, the records of human experimentation must be unredacted so that this history is not erased and forgotten. Third, higher education colleagues must get off our hobbyhorses and undergo more study of American medical experimentation to inform (not judge) those communities that are vaccine hesitant. Lastly, talk about more than just the Tuskegee Syphilis Experiment as a failure of medical ethics and human rights in the US.
As hard as it is to share my story, I hope it further humanizes the medical experimentation of vulnerable BIPOC communities.
Many of us are living and working among you, in plain sight.
I also hope that higher education colleagues will better understand that distrust toward the medical profession and government-sanctioned public health initiatives has roots that run deeply among Black and brown communities.
We must acknowledge these travesties and teach this history in order to heal as a nation.
Special Note: The Dean of the University of Pennsylvania’s Perlman School of Medicine (a.k.a. Penn Medicine) apologized for Dr. Albert M. Kligman’s experimentation on Black male prisoners on August 21, 2021, taking steps to remove Kligman’s name from the school’s legacy.
The school is also advancing several key DEIA initiatives to support BIPOC residencies and focus on positive health outcomes for BIPOC communities. There is no word as of this writing on whether or not Temple University plans to address its historical relationship with Dr. Albert Kligman.
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Header image is a detail of This is Harlem by Jacob Lawrence. Courtesy of Hirshhorn Museum and Sculpture Garden. © 2021 The Jacob and Gwendolyn Knight Lawrence Foundation, Seattle / Artists Rights Society (ARS), New York. For more information, click here.