History of Ethical Violations in the United States: A Look at Clinical Trials in Black Communities

Lisette Peres for Health Empowerment Coalition

African Americans have had a long and complicated history with the American healthcare system, leading to high levels of mistrust of doctors and other medical providers.¹ As a result, there are poorer health outcomes, people are less likely to seek care, and many are less likely to follow through with treatment suggestions given by physicians. A report published by the Center for Disease Control (CDC) in 2020 stated that the life expectancy for non-Hispanic Black males was 68 years compared to non-Hispanic White males which were 75 years. That is nearly a 10-year difference and one of the lowest life expectancies compared to other race and sex groups.² While there are multiple reasons for such a drastic difference, such as limited access to healthcare, no insurance, or the high cost of medical bills, a significant part of this disparity between White and Black males comes from racism in the healthcare system, which began over 400 years ago.

During the time of slavery in the United States, slaves were often used as test subjects for medical research.³ Physicians needed the consent of slave masters, who would frequently agree to give their slaves up for experimentation under the promise from researchers that their slaves’ productivity would be improved.⁴ One such example is J. Marion Sims–dubbed the “father of modern gynecology”–who often used slaves in his experiments.⁵ In his autobiography he describes Lucy, one of his test subjects, saying, “That was the days before anesthetics, and the poor girl, on her knees, bore the operation with great heroism and bravery.”⁶ Sims would perform surgeries on women such as Lucy without anesthesia, believing, as many others at the time did, that Black people had a higher pain tolerance than White people. He attempts to justify his actions by explaining, “Slaves were viewed as genetically more predisposed than Whites to the kind of domestication that trained them to bear pain.”⁷ This belief that African Americans were more tolerant to pain was one of many falsehoods that were circulated at the time and unfortunately continue to have an impact today.

Even after the Civil War and the emancipation of slaves, there was rampant mistreatment of freedmen and freedwomen and their descendants from the medical community. Legislation like Jim Crow laws was especially effective at preventing African Americans from receiving proper medical care and forcing them to endure injustices from healthcare providers. One of the most notable examples of ethical violations from this era was the case of Henrietta Lacks,⁸ who was an African American woman diagnosed with cervical cancer in 1951. Lacks visited Johns Hopkins Hospital for treatment, as it was one of the few hospitals that allowed African Americans at that time. While undergoing treatment for her cervical cancer, her cells were collected and used for research without her consent. Those cells ended up creating the immortal HeLa cell line that revolutionized science. They would go on to be used in testing the polio vaccine,HIV, and other viral treatments. While the development of HeLa cells and related therapies generated millions of dollars in profit, her family did not receive compensation for the incredible contributions Lacks’s cells have and continue to make to science. In fact, her family was unaware of the use of Lacks’s cells for many years, even though physicians and researchers used her name and provided her medical records to the public. Recently, they have filed a lawsuit against one of the companies that profited from her cells.⁹

While Henrietta Lacks's story could seem like an isolated incidence of abuse in the American medical system, a decades-long study in Alabama conducted during the same time also had lasting impacts on its test subjects for years to come. Formally called the Tuskegee Study of Untreated Syphilis in the Negro Male, the study began in 1932 by the U.S. Public Health Service (USPHS) to understand how untreated syphilis would affect Black men.¹⁰ They specifically chose Black people because at the time they were believed to be lustful” and “promiscuous,” leading to their high levels of venereal disease. Therefore, they could not be treated. This idea that different races were more susceptible to certain diseases and could not be treated was a widely held belief during the early 20th century when the eugenics movement was popular in the United States. Doctors would use eugenics and false studies to justify the sterilization of Black women and to avoid treating them.¹¹ The USPHS tested over 400 African American males who had syphilis and about 200 syphilis-free males to be used as controls. After the beginning of the study, penicillin became widely available as a syphilis treatment, but the researchers did not provide it to the syphilitic men; rather, they attempted to prevent their test subjects from receiving any external treatment outside of their study. The Tuskegee study ran until the 1970s and officially ended when it was revealed to the public–over two decades after the researchers knew penicillin to be an effective treatment for syphilis. These researchers deliberately allowed Black men to suffer from symptoms of syphilis and denied them treatment. In order to recruit test subjects, researchers knowingly lied to the men and told them that they would be receiving treatment for syphilis. Men signed up for the study, thinking they would be joining a mass treatment program, similar to one that had been conducted in the US a few years prior by the Rosenthal foundation.¹²

These are just a few of many ethical violations in research impacting Black Americans. Many more African Americans have been taken advantage of and used for their bodies, while alive and even after death. These preconceived notions about the inferiority and genetic difference between African Americans and their White counterparts have led to cases of discrimination to persist throughout history and today as well. In 2017, a page of a nursing textbook went viral because it described how different races should be treated differently and to expect varying reactions to those treatments. The section describing the health of Black people stated, “Blacks often report higher pain intensity than other cultures. They believe pain and suffering is inevitable. They believe prayer and laying on hands to heal pain and believe that relief is proportional to faith.”¹³ These stereotypes stem from centuries ago, but still have an impact on today’s society and affect the education of future healthcare workers. The fact that this textbook is only four years old means that thousands of nursing students were taught this and perhaps even still believe it to be true. Misconceptions like this influence how African American patients are treated and contribute to why there is a lack of trust between Black Americans and healthcare workers.

Given the history of mistreatment and abuse of Black Americans from the medical community, it should come as no surprise that nearly 40% of African Americans say they are skeptical of the COVID-19 vaccine as of 2020.¹⁴ As of 2021, the CDC reports that 56% of Black people have received at least one dose of the vaccine,¹⁵ the lowest amount compared to any other group. For decades, the American healthcare system has taken advantage of African Americans and actively deceived Black patients, making it hard for them to put their trust in the system now. It is also important to note how few African American doctors there are in America–only 5% of physicians are Black.¹⁶ A possible way to close these health disparities starts with education; this includes providing more health information to minority communities in schools, work, and other accessible forms of communication. This can be done through small, local initiatives that can provide this essential information, such as the Camden Coalition,¹⁷ which seeks to aid in preventative care for those who live in low-income communities and are unable to access information about their health.

References:

1. Kennedy, B. R., Mathis, C. C., & Woods, A. K. (2007). African Americans and their distrust of the health care system: healthcare for diverse populations. Journal of cultural diversity, 14(2), 56–60.

2. Arias, E., Tejada-Vera, B., Ahmad, F., & Kochanek, K. (2021). Provisional Life Expectancy Estimates for 2020. National Vital Statistics System Vital Statistics Rapid Release, 15. https://www.cdc.gov/nchs/data/vsrr/VSRR015-508.pdf

3. Savitt, T. L. (1982). The Use of Blacks for Medical Experimentation and Demonstration in the Old South. The Journal of Southern History, 48(3), 331–348. https://doi.org/10.2307/2207450

4. Kapsalis, T. (1997). Public Privates: Performing Gynecology from Both Ends of the Speculum. Duke University Press Books.

5. Washington, H.A. (2006). Medical Apartheid. Anchor Books.

6. Gill.W.W. (1884). Memorial Sketch of the Life of J.Marion Sims, M.D. D.Appleton and Company.

7. Adams, G. W. (1951). Review of Woman’s Surgeon; The Life Story of J. Marion Sims, by S. Harris & F. W. Browin. The Mississippi Valley Historical Review, 37(4), 730–731. https://doi.org/10.2307/1889402

8. Skloot, R. (2010). The Immortal Life of Henrietta Lacks. Crown.

9. Davies, E. (2021, October 4). 70 years ago, Henrietta Lacks’s cells were taken without consent. Now, her family wants justice. The Washington Post. https://www.washingtonpost.com/local/legal-issues/henrietta-lacks-family-sues-company/2021/10/04/810ffa6c-2531-11ec-8831-a31e7b3de188_story.html

10. Brandt, A. M. (1978). Racism and Research: The Case of the Tuskegee Syphilis Study. The Hastings Center Report, 8(6), 21–29. https://doi.org/10.2307/3561468

11. Farber S. A. (2008). U.S. scientists' role in the eugenics movement (1907-1939): a contemporary biologist's perspective. Zebrafish, 5(4), 243–245. https://doi.org/10.1089/zeb.2008.0576

12. Jones, J. H. (1993). Bad Blood. Free Press

13. Hilliard, J. (2017, October 20). A textbook stereotyped how racial groups respond to pain. The publisher is apologizing. The Boston Globe. https://www.bostonglobe.com/arts/books/2017/10/20/publisher-apologizes-after-outcry-over-offensive-nursing-textbook/k6COKWl5ftuHsjooIxUK4K/story.html

14. Funk, C., & Tyson, A. (2020, December 3). Intent to Get a COVID-19 Vaccine Rises to 60% as confidence in Research and Development Process Increases. Pew Research Center. https://www.pewresearch.org/science/2020/12/03/intent-to-get-a-covid-19-vaccine-rises-to-60-as-confidence-in-research-and-development-process-increases/

15. Centers for Disease Control and Prevention. (2021). Demographic Characteristics of People Receiving COVID-19 Vaccinations in the United States. Centers for Disease Control and Prevention. https://covid.cdc.gov/covid-data-tracker/#vaccination-demographic

16. Association of American Medical Colleges. (2018). Percentage of all active physicians by race/ethnicity, 2018. Diversity in Medicine : Facts and Figures 2019. https://www.aamc.org/data-reports/workforce/interactive-data/figure-18-percentage-all-active-physicians-race/ethnicity-2018

17. PBS. (2011, August 3). FRONTLINE | Doctor Hotspot (full report) | PBS [Video]. YouTube. https://www.youtube.com/watch?v=0DiwTjeF5AU

Author: Lisette Peres

Edited by: Mateya Rettig, Joy Jarnagin, and Michelle Pan

The Health Empowerment Coalition is a student-led organization that aims to empower individuals across the United States to improve their health literacy and take charge of their health. The views expressed in this article are the authors’ own and do not reflect the official opinions of the institutions at which they work and study. Additionally, the content in this article is not intended to provide medical advice.