Written by Aliyah Frederick, Anna Johnston, Jack McKeown, Freddie Yopp, Victoria Page, and Ashley Boccio
Harriet Washington’s Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present illustrates how the idea of informed consent has historically been a hotly debated topic within the medical field. Prior to the mid-twentieth century numerous abuses were committed by medical researchers in which subjects provided no consent to experimentation or were not fully informed on what experiments entailed. Much of this research was dangerous and had the potential to, and did, cause bodily harm and even death. To protect patients from abuses such as these, in 1947 the Atomic Energy Commission (AEC) issued an informed consent policy. This policy legally mandated that patients provide informed consent before they could participate in any research. Washington quotes the 1947 AEC policy that in order for an experiment to qualify as protecting subjects’ right to informed consent, “…a reasonable hope exists that the administration of such a substance will improve the condition of the patient,…the patient gives his complete and informed consent in writing, and that the responsible next of kin give in writing a similarly complete and informed consent, revocable at any time during the course of treatment.” Informed consent was not always guaranteed after the implementation of the policy. Nevertheless, the AEC 1947 policy was the first legal document that both defined informed consent and required researchers to certify that subjects had provided informed consent before submitting to a research study.
While the subject of informed consent is particularly prominent in the medical field, it is also ubiquitous in many other features of everyday life. Thus, informed consent is often represented in literature. Octavia Butler’s Clay’s Ark is one significant narrative that examines the complexities inherent in the idea of informed consent. At first glance, it seems as if Butler is simply introducing consent as something that is either granted or denied, and is therefore morally unambiguous. For instance, the protagonist Blake and his daughters are abducted at gunpoint by members of the infected community. This is ostensibly a clear violation of Blake and his daughters’ right to informed consent; they simply did not agree to be taken to the infected community. However, after Butler elucidates the nature of the disease, specifically its symptom of compulsivity to spread through infection, the previously condemnable action of the community becomes ethically blurred. In addition to the compulsive effects of the disease in general, the presence of children in the community further complicates the idea of informed consent. The children born to members of the community were unable to consent to their condition. Furthermore, they develop faster, both physically and cognitively, than human children. In contemporary American society, children lack the right to consent due to the fact that they are not considered cognitively mature until they’re at least 18 years old. Yet children in the infected community are mature at a much earlier age. This discrepancy complicates the basis of social rules that dictate the age at which consent can legally be provided. Hence, Butler demonstrates her brilliant writing style by initially leading readers to believe that the concept of informed consent is simple, yet throughout the progression of the novel it becomes clear that informed consent is complex, both in Clay’s Ark and in real life.
When exploring the complexities of consent in literature such as Clay’s Ark, it is essential that we connect real-life scenarios of these complexities to truly delve into the argument. In chapter eight of Harriet Washington’s Medical Aparthied, she tells the story of Fannie Lou Hamer, a sharecropper and granddaughter of enslaved people who became a prominent political activist. Hamer is non-consensually sterilized during a hospital procedure that was originally just to remove a benign uterine fibroid. Following the procedure, Hamer is unaware that the doctor had entirely removed her uterus, leaving her unable to bear children. During the procedure, Hamer is entirely unconscious as the doctor makes the decision to remove her uterus, thus there was no way that Hamer was able to give consent to this action. Even after the operation, the doctor fails to inform Hamer of what he had done. Instead, the doctor only informs the wife of the slave owner who brought her to the doctor for the procedure. It is not until word is spread on the plantation that Hamer becomes aware that she has been sterilized nonconsensually, left unable to have children of her own and start a family.
Another quote in Medical Apartheid, that shows how consent was an issue is, “Forced sterilization was encouraged by the infamous 1927 Buck v. Bell decision”(Washington, 202). In this case, a poor girl named Carrie Buck was forced to be sterilized by Justice Oliver Wendell who had previously stated, “Three generations of imbeciles are enough”(Washington, 202). Simply because this man did not want this family to keep reproducing, he forced a young girl to be sterilized. Carrie was not able to have a say in the matter even though it was her body. A man was deciding what happened to Buck and her body. Carrie Buck was not the only woman this had happened to, according to Washington, about 70,000 to 100,000 Americans were forced to be sterilized. Although many white women were forced to be sterilized, the majority of the women who were forced to be sterilized were African Americans.
Throughout Butler’s novel, Clay’s Ark, we see Eli’s struggle with informed consent and how he manages his innate compulsion to spread the infection, unwillingly given to him by the alien organism. Eli is a geologist who was a part of the Clay’s Ark mission to explore the Centauri System. However, when his ship arrived on foreign terrain, Eli and his crew were faced with an epidemic due to contact with a symbiont contained in the soil. As the entire crew became infected, they did everything in their power to try and contain this organism. However, all of their advanced technology was proven useless against the disease. As a result, a majority of the crew died, and those who survived were left with an intense compulsion to give the disease to others; with this fact, the remaining crew tried to commit suicide by sabotaging the ark in order to prevent an epidemic on Earth. However, even after the ship crashed, Eli manages to survive, and he is left hopeless in the desert, infected with an alien organism. Eli was not given a choice as to whether he was infected with the disease or not; no consent was involved, as he was infected against his own will. With this infection, he is given abilities and a “compulsion” that he never asked for. Eli describes the organism and its nonconsensual compulsion in the following manner:
“The organisms were not intelligent. They could not tell him how to keep himself alive, free, and able to find new hosts. But they became intensely uncomfortable if he did not, and their discomfort was his discomfort. He might interpret what they made him feel as pleasure when he did what was necessary, desirable, essential; or as pain when he tried to do what was terrifying, self-destructive, impossible. But what he was actually feeling were secondhand advance retreat responses of millions of tiny symbionts” (Butler 481).
In Eli’s defense, he tries in the most humane way possible, to continue to infect people (as per the organism’s will) and keep the organism contained to one area (the farm) in order to prevent an epidemic. By creating the Clay’s Ark community, Eli does this to the absolute best of his ability, seemingly preventing disaster while also satisfying the organism. However, it is essential that we explore the idea that Eli may not be entirely in control of his own actions. With this idea, how is it that we can truly give blame to Eli? When a member of the ranch, Meda, is left with explaining the organism to the ranch’s newest members, Blake and his daughters, Meda explains the independent nature of the organism and how it changes your DNA, even altering your brain, leaving you something other than human:
“According to the computer, they were more complete, independent organisms. Yet they made themselves at home in human cells in a way that should not have been possible – like plasmids invading and making themselves at home in bacteria. But these were hardly plasmids-solitary rings of DNA. These were more complex organisms that sought out higher game than bacteria and managed to combine with it without killing it. They had changed it, however, altered it slightly, subtly, cell by cell. In the most basic possible way, they had tampered with Meda’s genetic blueprint. They have left her no longer human” (Butler 497-498).
With this personification of the organism, it begs the question as to whether we can give it a voice in giving consent. Exploring the organism as an independent thinker, it is clear that it is the most non-consensual character in the entire novel. The organism does its job by reaching the brain of its victims and making them be unable to survive without spreading the infection and reproducing. Although we can argue the Eli and the members of the ranch should have been able to exercise their own free will to stop the organism intentions, it is impossible to say how much free will they truly had in this situation. This is where the true complexity of the situation becomes apparent. Can someone who is not in control of their own actions honestly receive consent from another individual who is soon to suffer at the organisms hands?
Analogous to the unjustified culpability assigned to Eli in Clay’s Ark, Medical Aparthied indicates that HIV positive African Americans have not consented to their condition, yet they nevertheless have still been wrongly held accountable for it. For instance, during the beginning of the AIDS epidemic in the 1980s, a clear dichotomy was developed between “innocent” and “guilty” HIV victims. Washington elucidates, “By the late 1980s, medical journals and news media referred to several classes of HIV-infected. There was early and frequent reference to ‘innocent victims of AIDS,’ which intimated the existence of other, presumably ‘guilty’ victims.” This blame-the-victim mentality contributed to the production of media and medical journals that specifically denigrated HIV positive African Americans. For example, Washington describes the racial discrimination, “News accounts feed this misconception by focusing on black people with HIV who live in squalor, have lost custody of their children, and who turn to crimes such as prostitution to feed a drug habit. So do many narrative-driven medical journal accounts.” Thus, there is a clear parallel between the blame directed at Eli in Clay’s Ark and HIV positive African Americans, neither of whom are responsible for, or consent to, their condition.
Adults often make decisions for the betterment of their childrens’ future, but when does a parent believing they know better turn into uninformed consent on behalf of the children? The children of Clay’s Ark were unable to decide their own fate, as they were born as not entirely human. A new form of life emerged which helped conceive children with unique abilities that were foreign to humans. The children did not consent or wish to be infected with the organism. The parents of Clay’s Ark, allowed their children to be born with the organism by way of “disease-induced mutation. Every child born to them after they get the disease,” (Butler, 512). By making this choice, parents condemned their offspring to a life full of the desire to spread the organism, rather than living a life by normal standards. The pattern of parents not giving their children the opportunity to consent is also seen in Medical Apartheid. When parents were faced with having children with mental handicaps or disabilities, they “began openly to recruit doctors to kill their children who were born with birth defects, and doctors came forward with their own proud confessions of infanticide”(Washington,192). The childrens’ lives were taken from them before they had an opportunity to give consent. Butler and Washington both draw upon this idea of informed consent by providing readers with personal experiences of children who are unfit to consent, following with the consequences these situations hold.
The explication of informed consent as a complex issue is not confined to literature or the study of African American medical history, yet rather is present in many aspects of modern society. One area in which informed consent is particularly intricate in contemporary times is the experimental process of deception studies. In this form of research, participants are deliberately misled to eliminate any potential biases and maintain the study’s objectivity. However, subjects are fully informed of the conditions and purpose of the experiment following its conclusion. Each study also undergoes a rigorous assessment by an Institutional Review Board (IRB) to verify that participants are only exposed to minimal risk. Nevertheless, the lack of full disclosure until after the conclusion of research questions whether informed consent can truly be provided in a deception study. For instance, when we talked with Ben Chapman he told us about an experiment in which he used genetically bred, non-pathogenic E. Coli to show how easy it is to spread while preparing food. Ben Chapman uses deception studies so the people involved in the study do not change what they are doing. If people knew they were being watched and recorded about how they prepare a chicken for dinner, they would be extra careful and possibly do things they wouldn’t usually do. Consent and whether it was given is very controversial with deception studies, the people in the study are not told everything about the study they are taking part in. In the case that he used the genetically bred, non-pathogenic E. Coli K12, consent was questioned. The study was a deception study on food preparation with washing chicken and how easy it is to spread the germs. Chapman used the E. Coli K12 to decrease exposing the people involved in the study to risk. One man in this study was agitated that he was not told about this part of the study and did not understand that the E. Coli used was harmless to him. The mans wife had a chronic illness and is very careful about what he is exposed to since her immune system is not strong. The man felt he was lied to and wronged since he did not give consent to be exposed to the E. Coli K12. Thus, despite Dr. Chapman’s experiment’s compliance with the IRB protocol, a subject believed that his right to informed consent had been violated. Therefore, informed consent can be legally defined by IRBs and the AEC policy of 1947, yet the intersection of Clay’s Ark, Medical Apartheid, and Dr. Chapman’s podcast reveals how its protection in society is a convoluted issue.
The idea of informed consent, at its surface, seems like a concept that is unwavering in its qualities. Simply put, one could initially assume that a person either agrees or disagrees to take part in a treatment, experiment, or surgery, and if these acts are forced upon a person, then there was a lack of consent. However, this is the most basic definition of this idea, and, as showcased by Harriet Washington, Octavia Butler and Ben Chapman, there are many intricacies that must be addressed when dealing with consent. The importance of understanding and questioning the nuances of informed consent can not be understated, as they are injected into aspects of societal, governmental, and even individual interaction. An understanding of informed consent correlates to an understanding of the violations of informed consent, and if those violations can possibly cause harm to a person, group, or an entire race, then it is exponentially more important to connect various perspectives (in this case the perspectives of Washington, Butler, and Chapman) in order to form the best possible conclusions and attempt to mitigate any blurred lines. However, as Ben Chapman exemplified, experiments such as deception studies still pose an ethical issue, and these studies are held across universities throughout the United States. In fact, many university websites have pages describing how to properly conduct deception research, with one of the key points being that the research offers no more than minimal risk. “Minimal risk” is a vague term, and what one person views as a minimal risk (potentially coming into contact with E. Coli) another could view as a major threat to oneself or others. Intoxication and consent are often topics of conversation that coincide. The United States government as a whole is very undecided on intoxication and whether or not being extremely drunk is valid as a defense. States vary in their determining if inebriation can remove specific intent to commit a crime. Intoxication can lower inhibitions and cause individuals to act in a manner they normally wouldn’t, much like Clay’s Ark, where the organism inhibited their decisions and compelled them to spread the disease, an act that they certainly would not have partaken in without the influence of an outside force. Although there is the difference that alcohol consumption is generally a willing act, it still poses intriguing questions about free will and the degree of intent when an individual’s mind has been altered. Overall, although there are many inconclusive ideas in regard to informed consent, it is important for an individual to have the best possible understanding of the aspects of consent that are unwavering, such as the 1947 AEC policy that laid the groundwork for overall consideration of well-being. Discussions of works such as Medical Aparthied provide this understanding, and documentation of ethical wrongdoing is necessary to discuss if the effect is a decreased chance of such tragedies taking place. Even novels like Clay’s Ark, rooted in science fiction, are important to discuss because although the circumstances surrounding informed consent are vastly different, it can potentially lead to thought-provoking discussion for a society that is still hindered by nuance and intricacy.