The Healthcare Distrust Isn’t Paranoia — The Experiments Didn’t Stop at Tuskegee

When a Black patient sits in a physician’s office and feels, somewhere beneath the rational surface of the interaction, a distrust that she cannot fully articulate and that her doctor cannot fully understand, she is not being irrational. She is carrying, in her body and in the collective memory of her community, the accumulated weight of four centuries of medical exploitation so systematic, so well-documented, and so recently practiced that calling the distrust “paranoia” requires either ignorance of the historical record or contempt for the people who survived it. The Tuskegee Syphilis Study is the name most Americans know, if they know any name at all, and it has become a kind of shorthand for the entire history of medical racism in this country — a single reference point that allows people to acknowledge the problem while containing it safely in the past, as if Tuskegee were an aberration, an isolated failure of ethics in an otherwise honorable profession. It was not an aberration. It was the visible tip of an iceberg that extends from the founding of American medicine to the present day, and the water it floats in is the ongoing, documented, measurable mistreatment of Black patients in American healthcare right now.

The history must be told in full, not because it is pleasant, but because the distrust it created is killing people today — causing Black patients to delay care, to refuse clinical trials, to avoid preventive screenings, to die of conditions that were treatable because they could not bring themselves to trust the system that their grandparents had warned them about. The distrust is the rational response. The question is how to honor it while preventing it from becoming the mechanism of its own perpetuation, how to acknowledge that the system was built on exploitation while also recognizing that the system contains, today, treatments and interventions that can save the lives of the people it once destroyed.

The Catalog of Horrors

J. Marion Sims is called the father of modern gynecology. He has statues. He has buildings named after him. He developed the surgical techniques that are still used to repair vesicovaginal fistulas, a devastating childbirth injury that causes chronic incontinence. And he developed those techniques by performing experimental surgeries, without anesthesia, on enslaved Black women who could not consent, over a period of years, in Montgomery, Alabama, between 1845 and 1849. His most famous subjects — Anarcha, Betsey, and Lucy, whose last names were not recorded because they were property — endured dozens of operations each. Anarcha underwent thirty surgeries. Without anesthesia. Because Sims, like many physicians of his era, maintained that Black people did not feel pain the way white people did — a belief that, as we shall see, has not been fully eradicated from American medicine.

The Tuskegee Syphilis Study, conducted by the United States Public Health Service from 1932 to 1972, enrolled 399 Black men with syphilis and 201 without it, in Macon County, Alabama, for what they were told was treatment for “bad blood.” They were not treated. They were observed. For forty years, the United States government watched these men sicken, go blind, go insane, and die of a disease for which effective treatment — penicillin — had been available since 1947. The men were not informed of their diagnosis. They were not offered treatment. They were actively prevented from receiving treatment, even when they sought it independently. Their wives contracted the disease. Their children were born with congenital syphilis. And the study continued, year after year, published in medical journals, funded by taxpayer dollars, overseen by physicians who had sworn to do no harm, until a whistleblower named Peter Buxtun went to the press in 1972.

Henrietta Lacks was a thirty-one-year-old Black woman who was treated for cervical cancer at Johns Hopkins Hospital in 1951. During her treatment, a sample of her cancer cells was taken without her knowledge or consent. Those cells, which came to be known as HeLa cells, proved to be biologically remarkable — they were the first human cells to survive and reproduce indefinitely in a laboratory setting. They became the foundation of modern cell biology. They were used to develop the polio vaccine, to study cancer, to advance gene mapping, and to generate billions of dollars in commercial value. Henrietta Lacks died of her cancer at age thirty-one. Her family was not informed that her cells had been taken. They were not compensated. They could not afford health insurance. And they learned about the cells from a researcher who contacted them in the 1970s, not to offer acknowledgment or restitution, but to request blood samples for further research.

“The distrust of medicine in the Black community is not a cultural artifact. It is an evidence-based conclusion drawn from centuries of data. The experiments are documented. The graves are real. The apologies, when they come at all, come decades too late.”
— Harriet A. Washington, author of Medical Apartheid

The catalog continues. The radiation experiments conducted on Black prisoners at Oregon State Prison and other facilities during the Cold War, in which men were subjected to radiation exposure to study its effects on reproductive function — without informed consent. The contraceptive trials conducted in Puerto Rico in the 1950s, where women were given experimental birth control pills at doses far higher than would later be approved, without being told they were part of a clinical trial, and without being warned of side effects that included blood clots and death. The forced sterilization programs that operated in over thirty states, disproportionately targeting Black women, some of which continued into the 1970s, and which sterilized an estimated 60,000 Americans against their will.

The Distrust Today

The historical exploitation did not end. It evolved. It moved from the overt experimentation of the Tuskegee era into the subtler but equally measurable forms of medical mistreatment that characterize the present. And the distrust it generated — the rational, evidence-based reluctance of Black patients to trust a medical system that has documented reasons for being untrustworthy — now functions as a barrier to the healthcare that could save their lives, creating a feedback loop in which historical exploitation produces distrust, distrust produces delayed care, and delayed care produces worse outcomes, which in turn reinforce the perception that the system does not serve Black patients well.

The data on how this distrust manifests is extensive. Black patients are less likely to seek preventive care. They are less likely to participate in clinical trials — which means that the drugs and treatments developed from those trials are less likely to be effective for Black populations, because they were not tested on them, because the populations they were supposed to serve did not trust the system enough to participate. They are more likely to present to emergency departments with advanced disease, because they delayed seeking care until symptoms became unbearable. They are less likely to follow prescribed treatment regimens, not because they are noncompliant but because compliance requires trust, and trust requires a history of trustworthy behavior that the medical system has not earned.

The COVID-19 pandemic made this dynamic visible to anyone who cared to look. When vaccines became available in early 2021, Black Americans were vaccinated at significantly lower rates than white Americans, a gap that persisted for months. The media narrative framed this as “vaccine hesitancy,” a term that placed the responsibility on the hesitant rather than on the system that had given them reason to hesitate. Black Americans were not hesitant because they were ignorant or superstitious. They were hesitant because they remembered Tuskegee, because their grandmothers had told them about the experiments, because the government that was now asking them to trust a rapidly developed vaccine was the same government that had, within living memory, deliberately withheld treatment from Black men to observe the progression of a fatal disease.

The Bias That Still Lives in the Exam Room

The historical exploitation would be less relevant if the present were fundamentally different, but the present is not fundamentally different. It is different in degree. It is different in form. But the core dynamic — the systematic undertreatment of Black patients within the American healthcare system — continues, and it has been documented with a rigor that leaves no room for denial.

In 2016, a study published in the Proceedings of the National Academy of Sciences by Kelly Hoffman and colleagues found that half of white medical students and residents held false beliefs about biological differences between Black and white patients — specifically, that Black patients have thicker skin, less sensitive nerve endings, and a higher pain tolerance than white patients. These beliefs, which have no basis in biology and which originate in the same racial pseudoscience that Sims used to justify operating on enslaved women without anesthesia, were directly correlated with treatment recommendations: medical trainees who endorsed these false beliefs were more likely to rate Black patients’ pain as lower and to recommend less adequate treatment for their pain.

This is not ancient history filtered through an ideological lens. This is a peer-reviewed study of current medical trainees, published in one of the most prestigious scientific journals in the world, showing that the racial pseudoscience of the slavery era is alive in American medical education today. And it manifests in measurable treatment disparities: Black patients receive less pain medication for the same conditions, are less likely to receive imaging studies, are less likely to be referred to specialists, are less likely to receive cardiac catheterization for heart attacks, and are less likely to receive kidney transplant referrals. The Institute of Medicine’s landmark 2003 report, Unequal Treatment, documented these disparities across virtually every domain of healthcare and concluded that they persisted even after controlling for insurance status, income, severity of disease, and comorbidities.

The Deadly Consequences

The distrust and the bias converge to produce outcomes that are measured in years of life lost. Black Americans have a life expectancy that is approximately four years shorter than white Americans. Black women are three times more likely to die in childbirth. Black men are twice as likely to die of prostate cancer, not because the cancer is more aggressive but because it is detected later, treated less aggressively, and followed up less consistently. Black patients with heart disease, kidney disease, diabetes, and cancer consistently show worse outcomes than white patients with the same conditions, and the gap persists after controlling for every variable that researchers can identify except the treatment itself.

The mechanism is straightforward and devastating. A Black patient who distrusts the healthcare system delays seeking care. By the time he presents, his condition is more advanced. He receives less aggressive treatment, both because of implicit bias in his physicians and because his own distrust makes him less likely to consent to invasive procedures. He is less likely to adhere to follow-up care, because adherence requires ongoing engagement with a system he does not trust. He dies sooner. And his death reinforces the community’s perception that the healthcare system fails Black patients, which increases the distrust, which delays the care, which worsens the outcomes. The cycle is self-reinforcing, and it has been spinning for generations.

What Must Change

The path forward requires simultaneous action on multiple fronts, and it requires, as a prerequisite, the intellectual honesty to acknowledge that the distrust is earned and that the burden of rebuilding trust falls on the system that destroyed it, not on the patients who were its victims.

Diversifying the physician workforce is the single most impactful structural change available. Black patients who see Black physicians have better outcomes across virtually every measure: they are more likely to seek preventive care, more likely to comply with treatment recommendations, more likely to report satisfaction with their care, and — in at least one rigorous study — more likely to agree to preventive screenings when the recommendation comes from a Black physician. The mechanism is trust, and trust is built on the perception that the person making the recommendation understands your experience and shares your interest. Currently, only 5.4% of American physicians are Black, in a country where 13.6% of the population is Black. Closing that gap requires investment in pipeline programs, in medical school scholarships, in residency support, and in the recruitment and retention of Black faculty at medical schools.

Community health workers — trusted members of the community who serve as bridges between the healthcare system and the patients it has historically failed — represent another evidence-based approach. Community health workers can provide health education, facilitate access to care, accompany patients to appointments, and translate between the medical system and the cultural context of their community. Programs that deploy community health workers in Black neighborhoods have shown improvements in medication adherence, screening rates, and chronic disease management, precisely because they place a trusted face between the patient and the system that the patient does not trust.

Transparency is the foundation on which all other interventions must be built. The medical system cannot earn the trust of Black patients while simultaneously concealing or minimizing the history that destroyed it. Medical schools must teach the full history of medical exploitation of Black Americans, not as a footnote or an elective but as a core component of medical ethics education. Hospitals must acknowledge the specific histories of the institutions where they operate — the experiments that were conducted, the patients who were harmed, the consent that was never obtained. This acknowledgment is not self-flagellation. It is the minimum prerequisite for credibility in a community that has been lied to by medical professionals for centuries.

Earning What Was Destroyed

Let me be direct about the paradox that Black patients face, because it is a paradox that no amount of historical acknowledgment can fully resolve. The healthcare system that abused them is also the healthcare system that contains the treatments, the screenings, the interventions, and the medications that can save their lives. The distrust that protects them psychologically from further exploitation also harms them medically by delaying the care they need. A Black man who avoids colonoscopy because he does not trust doctors is protecting himself from a system that has earned his distrust and simultaneously exposing himself to a cancer that kills Black men at higher rates precisely because it is detected later. The distrust is rational. Its consequences are fatal. And the resolution of that paradox cannot be the responsibility of the patient.

It must be the responsibility of the system. The system must earn the trust. It must earn it not through advertising campaigns and diversity statements and the performative gestures that have become the substitute for structural change in American institutions, but through the sustained, measurable, transparent work of treating Black patients as well as it treats white patients — prescribing the same pain medication, ordering the same imaging studies, making the same specialist referrals, providing the same follow-up care, and demonstrating, through data that is publicly available and independently audited, that the disparities are closing.

That work has begun, in some institutions, with some physicians, in some communities. It has not begun at the scale or the speed that the crisis demands. But it has begun, and it is producing results that suggest what is possible when the medical system decides to take the distrust seriously rather than dismissing it, to honor the history rather than minimizing it, and to earn the trust rather than expecting it. The experiments are over. The exploitation, in its most egregious forms, has ended. What has not ended is the obligation to repair what was broken, and that obligation will not be discharged by apologies alone. It will be discharged by outcomes — by the measurable, documented, year-over-year improvement in the health of the population that was harmed. That is the only apology that the living can accept. Everything else is words.