Racial Inequities In Medicine: The History Of Unethical Race-Based Experimentation

By Cornelia Baumgartner-Diolaiuti, clinical operations consultant, Cetacea Clinical, and Louis Johnson, principal consultant, Aries Clinical Consulting

Clinical trials have long been essential for advancing medicine, but the history of research involving Black Americans is marred by unethical practices that left a legacy of mistrust. This paper examines key historical cases, including the Tuskegee Syphilis Study and Sims’ gynecological experiments, which exploited Black communities without proper consent or care. These violations led to deep-rooted skepticism toward medical research, which persists today. Despite the introduction of research safeguards like the Belmont Report and institutional review boards (IRBs), Black Americans remain underrepresented in clinical trials, contributing to gaps in data and unequal treatment outcomes. Structural barriers, lack of targeted outreach, and implicit bias further limit participation.

This two-part article series explores the lingering impacts of these issues and discusses strategies to rebuild trust and improve representation in clinical research, ensuring that new treatments are tested and proven effective across all patient populations.

Unethical Experiments Targeted Black Americans For Two Centuries

Throughout the 19th and 20th centuries, researchers subjected Black Americans to numerous unethical medical studies (beyond the well-known Tuskegee Syphilis Study) that exploited them without proper consent or care. Notable examples include:

J. Marion Sims’ Gynecological Experiments (1845–1849)

Sims, often called the “father of gynecology,” conducted surgeries on enslaved Black women to treat vesico-vaginal fistula, without anesthesia or consent¹. He operated on one woman, Anarcha, around 30 times in agonizing procedures until achieving success¹. These experiments, performed on at least 10 enslaved women (including Lucy, Betsey, and Anarcha), caused immense suffering and were justified by the era’s racist belief that Black people felt less pain². Sims’ work advanced gynecology but at a terrible ethical cost, and only in recent years has his once-honored legacy been reexamined and his statues removed¹.

Tuskegee Syphilis Study (1932–1972)

In this notorious U.S. Public Health Service study, about 400 Black men with syphilis in Alabama were deceived and deliberately left untreated so researchers could observe the disease’s progression¹. Participants were told they were receiving “special free treatment,” but in reality, effective treatment (penicillin) was withheld even after it became available in the 1940s¹. The study continued for 40 years, through the era of the Nuremberg Code, until a whistleblower exposed it in 1972¹. By then, many men had died, their wives had been infected, and children were born with congenital syphilis. This egregious deception and neglect, conducted under government supervision, shattered trust in the medical system and is one of the key drivers of Black Americans’ medical mistrust¹.

Mustard Gas Testing On Black Soldiers (1940s)

During World War II, the U.S. military conducted secret chemical weapons experiments that were explicitly race-based. Black, Japanese-American, and Puerto Rican soldiers were locked in gas chambers and exposed to mustard gas and other agents, while white soldiers served as “controls”⁴. The Army wanted to see if there were differences in how the chemicals affected “Black skin.” Soldiers had no choice or full information, and many suffered debilitating injuries. One Black veteran, Rollins Edwards, had skin peeling off in flakes for decades after being a test subject⁴. The military admitted to these experiments years later, highlighting how even the U.S. government engaged in racially targeted human experimentation.

Holmesburg Prison Experiments (1950s–1970s)

For about two decades, Philadelphia’s Holmesburg Prison inmates — mostly Black men — were used in dermatological and biochemical experiments by researchers from the University of Pennsylvania⁵. Around 300 prisoners were intentionally exposed to infectious agents, skin blistering chemicals, and dioxin (a component of Agent Orange) to test products and chemicals⁵. Many of these men, often awaiting trial and desperate for bail money, suffered harm without truly informed consent. The city of Philadelphia formally apologized in 2022 for these unethical experiments on incarcerated Black men⁵.

Henrietta Lacks’ Cells Taken Without Consent (1951)

Henrietta Lacks was a 31-year-old Black woman whose cervical cancer cells were taken during treatment at Johns Hopkins Hospital without her knowledge or permission⁷. Her cells turned out to be the first “immortal” human cell line (HeLa cells), which reproduced endlessly in labs and led to countless medical breakthroughs — from the polio vaccine to cancer⁷. For decades, researchers used and shared her cells worldwide, publishing her name and even her genome, all without consent or compensation to her family⁷. The ethical uproar over her story — revealed to the public decades later — underscored the importance of informed consent and patients’ rights in research. It prompted modern agreements to protect donor privacy and involve the Lacks family in decisions about use of her cells⁷.

Forced Sterilizations Of Black Women (20th Century)

Outside of formal “experiments,” racist medical practices also targeted Black women’s reproductive rights. From the 1920s to 1970s, thousands of Black women were forcibly or coercively sterilized under state eugenics programs or under the guise of medical care. The practice was so common in the U.S. South that it was nicknamed the “Mississippi appendectomy,” referring to unnecessary hysterectomies performed on Black women without consent⁸. For example, civil rights activist Fannie Lou Hamer received a nonconsensual hysterectomy in 1961 while undergoing a minor tumor surgery⁸. These abuses, aimed at limiting the Black population, caused lasting trauma and outrage and eventually led to stricter informed consent requirements for sterilization procedures.

1990s “Aggression” Study On Black Children

Shockingly, unethical research targeting Black Americans continued into the late 20th century. In the early 1990s, researchers at a prestigious Johns Hopkins Hospital recruited only African American boys for a study on the supposed genetic basis of aggression⁶. Parents were given money to enroll their sons. The boys were subjected to extreme protocols: they were taken off all their medications (even asthma inhalers), put on a special diet, kept overnight without parents, denied water, repeatedly stuck with hourly blood draws, and given fenfluramine (a serotonergic agent originally used as an appetite suppressant later linked to serious cardiovascular side effects) to see its effect on brain chemistry and behavior⁶. This study not only posed serious risks to the children, but it also explicitly singled out Black children as test subjects. When this came to light, it was widely condemned as a blatant violation of ethical standards and civil rights¹. It reinforced suspicions in the Black community that medical research can still single them out unfairly.

Mistreatment Yielded Both Community Distrust And Research Reforms

These and other unethical studies caused physical harm and death, and they sowed deep mistrust of the medical establishment in Black communities. Importantly, they also spurred major reforms in medical ethics. Public outrage over the Tuskegee revelations led to the National Research Act of 1974, which established the modern framework for research ethics oversight¹⁶. This law created a national commission that issued the Belmont Report in 1979, outlining core principles for research on humans – respect for persons, beneficence, and justice¹⁶. As a result, studies now legally require informed consent from participants and independent review by IRBs to ensure ethical conduct¹⁶ . The legacy of exploitation also prompted efforts to ensure the burdens and benefits of research are shared justly, so no group is consistently “guinea-pigged” for others’ gain. In short, these historical injustices fundamentally changed how research is regulated, making voluntary consent and participant safety paramount in medical studies.

Lasting Impact On Trust And Medical Ethics

The history of medical abuse has had a profound effect on Black Americans’ trust in healthcare. Knowledge of events like Tuskegee or Henrietta Lacks’ story has been passed down through families and communities, contributing to a caution or wariness about doctors and research. For instance, even today, many Black Americans cite the Tuskegee study when explaining their reluctance to participate in medical research or to try new therapies¹. This mistrust is reinforced by ongoing disparities in treatment and by personal experiences of bias. Studies confirm that Black patients often feel they receive less information, empathy, and quality care than whites¹⁶. There is also a persistent (and not unfounded) worry that research findings could be misused to reinforce stereotypes or discrimination against Black people¹⁶ . All of this means that researchers today must work intentionally to rebuild trust, for example, by engaging with Black communities, being transparent, and ensuring research benefits those communities.

On the positive side, the painful legacy of these unethical experiments has driven today’s ethical safeguards. Modern medical research training often teaches these historical cases as cautionary tales or reminders of what must never happen again. The Belmont Report principles (born directly from Tuskegee’s scandal) and the requirement of diverse, informed participant pools are now standard¹⁶. In addition, many institutions have community advisory boards or ethics consultations, specifically to consider impacts on marginalized groups. In recent years, there have even been symbolic acts of reconciliation, such as formal apologies (e.g., the 2022 Philadelphia apology for the Holmesburg prison experiments⁵) and memorials to victims — which acknowledge past wrongs and pledge better conduct going forward. All these efforts recognize that ethical research and equitable healthcare are inseparable: the medical field cannot advance unless it earns the trust of all communities it serves.

As noted, racial inequities are rooted in history of bias and unethical experimentation.  The generational trauma of the past has direct influence on today’s approaches to medical treatment and minority participation in clinical trials. 

Part two of this series (publishing April 22) discusses the gaps in modern-day clinical trial diversity, global consequences of underrepresentation in trial populations, and the intersection of race and gender.

References:

1. Howell, J.D. Understanding Black Distrust of Medicine – University of Michigan School of Public Health Understanding Black Distrust of Medicine | Findings | University of Michigan School of Public Health | Racism | Vaccines | Infectious Disease | Health Disparities
2. Somerstein, S.F. Medical Exploitation of Black Women – Equal Justice Initiative Medical Exploitation of Black Women
3. More than Tuskegee: Understanding Mistrust about Research Participation – Journal of Healthcare for the Poor and Underserved  More than Tuskegee: Understanding Mistrust about Research Participation - PMC
4. Love, David. “Pentagon Admitted to Using Black Soldiers as Human Guinea Pigs in WWII” – IBW21 (Oct 23, 2019) Pentagon Admitted to Using Black Soldiers as Human Guinea Pigs in WWII
5. Associated Press. Philadelphia apologizes for experiments on Black inmates (WHYY, Oct 6, 2022) Philadelphia apologizes for experiments on Black inmates - WHYY
6. More than Tuskegee: Understanding Mistrust about Research Participation – Journal of Healthcare for the Poor and Underserved pmc.ncbi.nlm.nih.gov
7. Health Research Authority (U.K.). Henrietta Lacks and informed consent (Oct 11, 2021) Why informed consent must be at the heart of medical ethics and regulation – a blog by Lou Silver Equality, Diversity and Inclusion Manager - Health Research Authority
8. National Women’s History Museum. Biography of Fannie Lou Hamer Fannie Lou Hamer | National Women's History Museum
9. Kaiser Family Foundation – Racial and Ethnic Disparities in Access to Medical Advancements (Feb 22, 2024) Racial and Ethnic Disparities in Access to Medical Advancements and Technologies | KFF)
10. Harvard Medical School – Embracing Diversity: Inclusive Clinical Trials (June 30, 2023) Embracing Diversity: The Imperative for Inclusive Clinical Trials | HMS Postgraduate Education
11. Rutgers Cancer Institute – Connecting Black Women with Clinical Trials (April 1, 2023) Addressing the Challenge: Connecting Black Women with Clinical Trials | Rutgers Cancer Institute of New Jersey
12. Pharmacy Times – Equitable Representation in Triple-Negative Breast Cancer Clinical Trials (2023) Equitable Representation in Triple-Negative Breast Cancer Clinical Trials
13. Meloney, L.G. et al. Advancing inclusion of underrepresented women in clinical research – Ther Innov Regul Sci (2022)  Advancing the inclusion of underrepresented women in clinical research - PMC
14. Northwestern Now – 30 Years After NIH Inclusion Mandate (June 6, 2023) The law mandating the inclusion of women in medical research turns 30. Where do we stand? - Northwestern Now
15. AMA Journal of Ethics – Black Maternal Health Inequity (2024) Cultivating Critical Love to Improve Black Maternal Health Outcomes | Journal of Ethics | American Medical Association
16. (CDC, 2024) Centers for Disease Control and Prevention. (n.d.). Tuskegee study - Timeline and impact on research. https://www.cdc.gov/tuskegee/about/effects-research.html

About The Authors:

Cornelia Baumgartner-Diolaiuti is the founder of Cetacea Clinical GmbH, a clinical operations consultancy specializing in early-phase oncology and infectious disease trials. She began her career as a CRA at Pfizer and has since gained over 24 years of experience in clinical research, holding key roles at NBE-Therapeutics, Aridis Pharmaceuticals, and Mundipharma EDO. At Cetacea Clinical, Cornelia provides strategic consulting, vendor oversight, and a ready-to-use quality management system (QMS) to biotech startups. Connect with Cornelia on LinkedIn.

Louis Johnson is a medical research professional with over 25 years of experience in the pharmaceutical industry. The first three years were in pharma sales, with the remaining years in clinical research. His expertise lies in clinical trial management and operations with a special focus on diversity in clinical trials and healthcare equality.  Louis is also skilled in the areas of process improvement, strategy, and planning. Louis has Bachelor of Arts and Master of Science degrees in biology from Hampton University and a Doctor of Health Administration (abd) from A.T. Still University.  In his spare time, he is a fitness enthusiast and is a volunteer football coach. He lives in the western suburbs of Chicago.