Unethical Experiments and the Lack of Consent on Black People as demonstrated by “The Evening and the Morning and the Night”

 Raelyne Rankens 

Professor Harris 

English 2016 

21 November 2024 

Unethical Experiments and the Lack of Consent on Black People as demonstrated by “The Evening and the Morning and the Night” 

Lack of consent and consideration pervades the unethical history of medical experimentation on black people. Examining the case of Henrietta Lacks and the Tuskegee Syphilis Study reveals corruption within the medical field that has created a deep mistrust of the medical world among the black population. The short story “The Evening and the Morning and the Night” by Octavia E Butler is a fictional representation of scientific experiments and discrimination that black people have experienced. These cases have created a mistrust of the medical world inside of black populations and all lead into the theory of Afro-Pessimism, which is the framework for how black people are portrayed in society and that anti-black culture, like experimentation, is a necessary function in the present day. 

Before the cases of Henrietta Lacks and the Tuskegee Syphilis study, informed consent was not a concern within medical practice. It is important to first understand what bioethics means when dealing with this topic. The ethics part of this word deals with the “identification, study, and resolution or mitigation of conflicts among competing values or goals” (Fleck & McCurdy), while the term bio refers to being within the medical world. This definition directly relates to the topic at hand, where numerous black people were experimented on with either having forced or coerced consent. In the present day, it is necessary to get informed consent from the individual before any action can be taken.  

Medical practitioners forcefully and coercively sterilized black people to fight against what they considered genetic or hereditary defects as well as overpopulation.  Through the early 20th century, “countries passed laws authorizing the coerced or forced sterilizations of those they believed should not be permitted to procreate” (Patel). Overall, telling minority populations what they can do with their own bodies “reveals issues of discrimination and social exclusion” (Cohen qtd.in Patel). This is a clear violation against the ICCPR (or International Covenant on Civil and Political Rights) that states people have “the right to determine what happens to one’s body” (United Nations qtd.in Patel). This is a problem that has been seen throughout the story of Henrietta Lacks and the Tuskegee Syphilis Study and leads to the mistrust of medical practitioners in black populations. 

Henrietta Lacks was born August 1st of 1920 and sought out medical help for cervical cancer in 1951 at the John Hopkins Hospital where she died. A doctor collected her cells “without informed consent and [are] still used today for medical research” (Baptiste). It was found that the HeLa cells were “the first documented human cell line that divided easily and indefinitely” (Skloot qtd.in Baptiste) which is how they are still used today. Despite the billions of dollars in profit pharmaceutical companies received from the use of HeLa cells (Skloot qtd.in Baptiste), the Lacks family has received no compensation. Despite that, the family must be acknowledged in any publication “that uses full genomic data from HeLa cells” (Sodeke & Powell qtd.in Baptiste) as now enforced by the National Institutes of Health. While there is also a proposal review committee for the use of these cells, it took forty years for the family to learn about the use of Henrietta’s cells. As a result of the corruption displayed in the case of Henrietta Lacks, many black people choose to specifically seek out black doctors so that they will not face discrimination and unethical medical practices. 

The Tuskegee Syphilis Study occurred from the years 1932 to 1972 in which six hundred black Americans in Macon County Alabama were part of an experiment ran by the Public Health Service. 399 of the participants already had syphilis, and the rest were control subjects. In this study, the participants were “poor sharecroppers with little to no formal education” (Rusert qtd.in Tobin) and were told that they would be receiving “free medical care and burial insurance” (Jones qtd.in Tobin). While the medical care they received was free, the doctors conducting the experiment purposely withheld medical treatment. Though Penicillin had been discovered to treat syphilis in 1944, the doctors believed that this experiment was a “never-again-to-be-repeated opportunity” (Tobin). It is believed that “perhaps 100 men died as direct result of syphilis” (Jones qtd.in Tobin). The doctors also believed that the men had no purpose other than when they died, this led to the government withholding free burial until there had been an autopsy, thus forcing the family to hand over their relative (Rusert qtd.in Tobin). 

During this time, it was not necessary to gain informed consent from patients. To attempt equality black physicians tried “a dozen attempts to include Black physicians” (Davis/Baker qtd.in Tobin) in the American Medical Association (AMA). After these failed attempts and blatant acts of segregation, black Americans created a medical journal called the National Medical Association (NMA). The latter group did not desegregate until 1968. The Tuskegee Syphilis Study and resulting segregation in medical journals has created a distrust of medical practices for black people and thus creates an example of Afro-futurism in the real world. Even though the participants were free, they were still considered “less than” which is the definition of Afro-Pessimism, that black people will always be considered slaves. 

A fictional yet symbolic short story “The Evening and the Morning and the Night” by Octavia E. Butler describes experimentation around black people in a medical environment. A girl named Lynn has a disease called Duryea-Gode Disease (DGD), which is a degenerative disease passed on through generations that affected the black population. It was caused by governmental vaccines that resulted in people digging into their skin till death. The author, Octavia E. Butler combined Huntington’s disease, Phenylketonuria, and Lesh-Nyan disease and added the idea that the people were trapped within their own flesh. In the story, Lynn has two parents who had DGD. Once symptoms start to show, the people afflicted with DGD are sent to a hospital or care unit where in most places they are restrained or “[put] in a bare room [to] let them finish themselves” (Butler). The people with this disease must also carry around an emblem that tells doctors that they cannot have most medicines or foods other than biscuits. 

Throughout this story it is discussed between the two main characters, Lynn and Alan, about whether the government has the right to sterilize anyone with this disease. Lynn says, “I don't want kids, but I don’t want someone else telling me I can’t have any” (Butler). This relates to the earlier topic of forced sterilization within the black populations throughout history. In her story, Octavia E. Butler not only points out the lack of trust in the government but also shows why some might not want to trust their medical experts. Butler is supporting the idea that “race is not a biological reality but a social construct. Race as biology is fiction; racism as a social problem is real” (Lujan & DiCarlo qtd.in Baptiste). This short story reflects that ideology and gives a fictional example why black people seek out black medical practitioners. The theory of Afro-Futurism agrees and claims that black people will always be slaves in the minds of the greater society.  

When putting all these experiments together, they show the history of forced or coerced medical experiments and why black people do not trust doctors. It is said by Pew Research Center that, 55% of Black Americans “have had negative experiences with doctors... and feeling like the pain they were experiencing was not taken seriously” (Cox). This problem within communities needs to be addressed since the only thing doctors are doing is supporting the idea that black people are less than white people. These examples, both fictional and historical, show how Afro-Pessimism is a prevalent aspect of the Black experience within the medical world.  

 

 

 

 

 

 

 

 

 

 

 

 

 

Works Cited 

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Baptiste, Diana-Lyn, et al. “Henrietta Lacks and America’s Dark History of Research Involving African Americans.” Nursing Open, U.S. National Library of Medicine, 17 May 2022, pmc.ncbi.nlm.nih.gov/articles/PMC9374392/.  

Butler, Octavia E. The Evening and the Morning and the Night. Omni Publications International, 1996. 

Cohen J, Ezer T. Human rights in patient care: a theoretical and practical framework. Health Hum Rights. 2013; 15(2):7.  

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Davis RB. Achieving racial harmony for the benefit of patients and communities: contrition, reconciliation, and collaboration. JAMA 2008; 300:323-325. 

Fleck, Len, and Jennifer McCurdy. “What Is Bioethics?” What Is Bioethics?, 2024, bioethics.msu.edu/what-is-bioethics.  

Jones JH. Bad Blood: the Tuskegee syphilis experiment, new expanded ed. New York: Free Press; 1981,1993. 

Lujan, H.L., & DiCarlo, S.E. (2018). Science reflects history as society influences science: Brief history of “race,” “race correction,” and the spirometer. Advances in Physiology Education, 42(2), 163-165. https://doi.org/10.1152/advan.00196.2017.  

Patel, Priti. “Forced Sterilization of Women as Discrimination - Public Health Reviews.” SpringerLink, BioMed Central, 14 July 2017, link.springer.com/article/10.1186/s40985-017-0060-9.  

Rusert B. “A study in nature”: the Tuskegee experiments and the New South plantation. J Med Humanit 2009; 30:155-171. 

Skloot, R. (2010). The immortal life of Henrietta Lacks. Broadway paperbacks. 

Sodeke, S. O., & Powell. L.R. (2019). Paying tribute to Henrietta lacks at Tuskegee University and at the Virginia Henrietta lacks commission, Richmond, Virginia. J Health Care Poor Underserved, 30(4s), 1-11. https://doi.org/10.1353/hpu.2019.0109.  

Tobin, Martin  J. “Fiftieth Anniversary of Uncovering the Tuskegee Syphilis Study: The Story and Timeless Lessons.” American Journal of Respiratory and Critical Care Medicine, U.S. National Library of Medicine, 15 May 2022, pmc.ncbi.nlm.nih.gov/articles/PMC9872801/. 

United Nations. 1976 International Covenant on Civil and Political Rights (ICCPR). Available at: https://www.ohchr.org/en/professionalinterest/pages/ccpr.aspx. Accessed 3 Jan 2017.