The Elm

Examining the historical and current context of medical abuse of BIPOC populations that positions science and medical advancements over individual human lives and safety.

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For many people in the United States, the approval of the ​​​​Pfizer-BioNTech and Moderna COVID-19 vaccines symbolize hope for the end of a virus that has plagued this country and the world. The Centers for Disease Control and Prevention (CDC) has reported 349,246 COVID-19-related deaths across the United States as of Jan. 3. Black, Indigenous and People of Color (BIPOC) have been disproportionately impacted by COVID-19.

In November, the CDC reported that when compared to white/non-Latinx persons, Indigenous people are 1.8 times more likely to be diagnosed, 4 times more like to be hospitalized, and 2.6 times more likely to die; Asians are 0.6 times more likely to be diagnosed, 1.2 times more like to be hospitalized, and 1.1 times more likely to die; Black people are 1.4 times more likely to be diagnosed, 3.7 times more like to be hospitalized, and 2.8 times more likely to die; and Latinx persons are 1.7 times more likely to be diagnosed, 4.1 times more like to be hospitalized, and 2.8 times more likely to die. Yet a recent national survey conducted by the COVID Collaborative, Langer Research, UnidosUS, and the NAACP found that 14 percent of Black Americans trust the COVID-19 vaccines will be safe and 18 percent trust it will be effective while 34 percent of Latinx Americans trust the vaccines will be safe and 40 percent trust it will be effective.

So how can there be such levels of distrust in a vaccine and its effectiveness among some of the most impacted populations? While the answer to this is complex, it is directly connected to white supremacy, the all-encompassing centrality and assumed superiority of people defined and perceived as white and the practices and standards of norms based upon that assumption, and the role that structurally oppressive systems play in giving privilege to those with agent identities while disenfranchising others. Themes of power and dominance can be present in interactions between patients and doctors and the manner in which vaccination skeptics are often ridiculed or dismissed as uneducated. It is the way that some anchor institutions have centered their will and domination over the neighborhoods that they occupy. It is the whispered warnings in communities of color and neighborhoods of lower socio-economic status, “Don't go past there at night, you might come up missing” (Johnson as cited in Brewington and Kohn, 2008).

My purpose in writing this piece is to give the historical and current context of medical abuse of BIPOC populations that positions science and medical advancements over individual human lives and safety. From my observations, the Tuskegee syphilis experiment seems to be the most mentioned medical experiment when discussing BIPOC medical mistrust, but the legacy of experimentation and unethical research of BIPOC and marginalized populations does not begin and end with Tuskegee. While it is a monumental example of experimentation and research without informed consent, proper medical intervention, or disclosure of the true nature of the study, this case does not solely shape medical mistrust. Instead, the roots of medical mistrust are much deeper and wider.

As a health and human services university and an anchor institution of Baltimore, I feel that it is imperative that we are knowledgeable about the atrocities committed by medical professionals and scientists that have contributed to collective mistrust. We should also seek to understand the current implications of white supremacy, dominance, and power as we engage in conversations about COVID-19 vaccinations with BIPOC and marginalized populations.

Medical Experiments on BIPOCs and Marginalized Populations

1845 (four years): Gynecological surgical experiments (enslaved women of African descent)

1879 (94 years): Assimilation experiments (Indigenous children)

1927: Lyles Station (Indiana) radiation experiment (Black children)

1932 (40 years): Tuskegee (Alabama) syphilis experiment (Black men)

1940s: Stateville Penitentiary (Illinois) malaria study (white male prisoners)

1948: Guatemala syphilis experiments (Guatemalan prisoners, military, and mental health patients)

1951: Henrietta Lacks (Black woman)

1952 (20-plus years): Project 4.1 Marshall Islands (Pacific Islanders)

1960 (11 years): University of Cincinnati radiation study (Black adult cancer patients)

1973 (three years): Indian Health Service involuntary sterilization (Indigenous people)

1993: Baltimore lead paint study (low socio-economic status, primarily Black)

 

This timeline does not capture all the medical and scientific experiments that used and abused BIPOC bodies and marginalized populations. Instead, I created it to serve as an illustration that these events are not isolated and span across centuries. The cases were selected to capture the variation of race, ethnicity, age, social-economic status, freedom, language, and nationality of the impacted populations. In an attempt to be concise, I will only highlight a few cases of medical and scientific experiments, but I encourage you to research the remainder and explore how these experiences connect to current context. While I feel confident that these sorts of experiments began centuries prior, the timeline begins in 1845. It seems appropriate at a health and human services university to begin this timeline with the experiments on enslaved women of African descent at the hands of J. Marion Sims, who was referred to as the “Father of Modern Gynecology.”

Anarcha, Betsy, and Lucy were subjected to painful and lengthy surgeries, often in front of an audience of other doctors, while screaming in anguish as Sims aimed to perfect a treatment for vesicovaginal fistula (a tear between the uterus and bladder as a result of childbirth that was common during the 19th century). In Sims’ autobiography he writes, “Lucy’s agony was extreme. She was much prostrated, and I thought she was going to die. … It took Lucy two or three months to recover entirely from the effects of the operation. After she had recovered entirely from the effect of this experiment, I put her on a table, to examine.” Anesthesia was not used during these experiments, which was attributed to its high cost and high risk, the “subjects” being viewed as property, and the belief that Black people did not feel pain in the same way as white people. The latter is a belief that still prevails in modern medical settings.

A 2016 study published in the Proceedings of the National Academies of Science, found that 50 percent of medical trainees surveyed believed at least one of the following: Black people’s nerve endings are less sensitive than white people’s, Black people’s skin is thicker than white people’s, and Black people’s blood coagulates more quickly than white people’s. Additionally, a textbook used in educating nurses, Nursing: A Concept-Based Approach to Learning, advises readers that “a client's culture influences their response to, and beliefs about pain.” It lists the following:

• “Arabs/Muslims may not request pain medicine but instead thank Allah for pain if it is the result of the healing medical process.”
• “Clients from Asian cultures often value stoicism as a response to pain. A client who complains openly about pain is thought to have poor social skills.”
• “Blacks often report higher pain intensity than other cultures.”
• “Hispanics may believe that pain is a form of punishment and that suffering must be endured if they are to enter heaven.”
• “Jews may be vocal and demand assistance.”
• “Native Americans may prefer to receive medications that have been blessed by a tribal shaman.”

Stereotypes like the ones above position medical professionals to employ bias to evaluate pain instead of listening to patients and assessing needs. It is inaccuracies like these that contribute to the mistreatment of BIPOC patients, which contributes to medical mistrust. It is important to note that once Sims perfected his surgeries, he went on to perform them on white women who were sedated.

Black people are not the only BIPOC racial/ethnic group who have been the “subject” of experimentation. Institutions such as the Carlisle Indian Industrial School educated over 10,000 Indigenous children between 1879 and 1918 with the purpose of cultural assimilation based on the ideas expressed in Capt. Richard H. Pratt’s speech, “Kill the Indian, and Save the Man.” While the violence and mistreatment at Indigenous boarding schools is well documented, less exploration has been conducted on the medical experiments on the children at these schools. There is evidence of an inquiry to federal authorities by the Children’s Defense Fund in March 1975 regarding trachoma drug testing on Indigenous children without the informed consent of the children or their parents. While it has been confirmed that the Indian Health Service did conduct trachoma treatment research on Indigenous children, it was indicated that the risk of delayed treatment was minimal for the placebos group. The U.S. government has not admitted to medical wrongdoing at Indigenous boarding schools. However, the Department of Indian Affairs of Canada has been identified as authorizing highly unethical nutrition experiments between 1942 and 1952 at six Indigenous boarding schools, which resulted in multiple child deaths (MacDonald, Stanwick, & Lynk, 2014).

A lead paint study is another example that deeply impacts Baltimore City and can be a major factor in how BIPOC populations across this majority-Black city view research institutions. Starting in 1993, primarily Black, low-income families were targeted by Kennedy Krieger Institute (KKI), an affiliated institute of Johns Hopkins University, to participate in a study on the effectiveness of low-cost lead-abatement procedures for reducing blood lead levels in children living in public housing. Although there was a protocol for referring children with elevated blood lead levels for medical intervention, two families sued KKI for not fully informing participants of risks and for not reporting test results in a timely manner. In 2001, the Maryland Court of Appeals provided a ruling on Grimes v. Kennedy Krieger Institute, Inc., likening the KKI study to Nazi research on prisoners and the Tuskegee syphilis study, adding that KKI used children as “measuring tools” (cited in Buchanan and Miller, 2006).

While I have highlighted a few examples of medical experimentation and research on BIPOC and marginalized populations, this is not an exhaustive list. It is important for health and human services providers to understand the role of historical and current context in the critical examination of reactions to COVID-19 vaccines. As the country moves forward with vaccinations that may be scrutinized by BIPOC and marginalized populations, we should all reflect on how these feelings of skepticism are valid and understandable. And while practitioners may feel compelled to convince clients and patients that the vaccines are safe, it is important to create space for genuine dialogue around the fears and opportunities evoked in individuals across social identities based on historical knowledge, lived experiences, and the accelerated production and testing of the vaccines. 

Courtney J. Jones Carney, MBA, is the executive director of the University of Maryland, Baltimore (UMB) Intercultural Leadership and Engagement Center and director of the Intercultural Center, Division of Student Affairs. She is also the Intercultural Leadership Post-baccalaureate Certificate program director at the University of Maryland Graduate School and a member of the UMB Diversity Advisory Council.

References

Brewington, K. and Kohn, D. (2008). “Suspicion still simmers just under the surface.” The Baltimore Sun. https://www.baltimoresun.com/news/bs-xpm-2008-04-23-0804230255-story.html

Buchanan, D.R. and Miller, F.G. (2006). “Justice and Fairness in the Kennedy Krieger Institute Lead Paint Study: the Ethics of Public Health Research on Less Expensive, Less Effective Interventions.” American Journal of Public Health. 96(5), 781-787.

Centers for Disease Control and Prevention. (2020). CDC COVID Data Tracker. https://covid.cdc.gov/covid-data-tracker/#cases_casesper100klast7days

COVID Collaborative. Retrieved from: (2020). Coronavirus Vaccine Hesitancy in Black and Latinx Communities. https://static1.squarespace.com/static/5f85f5a156091e113f96e4d3/t/5fb72481b1eb2e6cf845457f/1605837977495/VaccineHesitancy_BlackLatinx_Final_11.19.pdf

McElfish, P.A., Hallgren. E., and Yamada, S. (2015). “Effect of U.S. Health Policies on Health Care Access for Marshallese Migrants.” American Journal of Public Health. 105(4), 637-643.

Holland, B. (2017). “The ‘Father of Modern Gynecology’ Performed Shocking Experiments on Slaves.” https://www.history.com/news/the-father-of-modern-gynecology-performed-shocking-experiments-on-slaves

Jaschik, S. (2017). “Anger Over Stereotypes in Textbook.” https://www.insidehighered.com/news/2017/10/23/nursing-textbook-pulled-over-stereotypes

Kennedy, E.J. (2019). “On Indigenous Peoples Day, Recalling forced sterilization of Native American Women.” MinnPost. https://www.minnpost.com/community-voices/2019/10/on-indigenous-peoples-day-recalling-forced-sterilizations-of-native-american-women/#:~:text=It%20outlined%20the%20genocidal%20practices,were%20of%20child%2Dbearing%20age.

MacDonald, N.E., Stanwick, R. and Lynk, A. (2014). “Canada’s shameful history of nutrition research on residential school children: The need for strong medical ethics in Aboriginal health research.” Paediatrics & Child Health. 19(2), 64.

Sabin, J.A. (2020). “How we fail black patients in pain.” https://www.aamc.org/news-insights/how-we-fail-black-patients-pain

Williams, S.A.M. (2020). “Medical Experimentation on Indigenous Boarding School Students.” https://www.samanthamwilliams.com/blog/medical-experimentation-on-indigenous-boarding-school-students

Dockser Marcus, A. (2020). “Henrietta Lacks and Her Remarkable Cells Will Finally See Some Payback.” The Wall Street Journal. Retrieved from: https://www.wsj.com/articles/henrietta-lacks-and-her-remarkable-cells-will-finally-see-some-payback-11596295285

 

 

Disclaimer: Elm Voices & Opinions articles reflect the thoughts or opinions of their individual authors, and may not represent the thoughts or values of UMB as an institution.