Percival Everett’s Zulus follows the journey of Alice Achitophel as she confronts the hopelessness and cruelty of a postapocalyptic world devastated by the choices of humanity. While the narrative itself is largely surreal, the novel provides insight on very real and pressing issues that have beset American society from the nation’s earliest days to contemporary times. One of these perplexing themes is the issue of informed consent. Throughout the course of the novel, Alice is subject to procedures and decisions without her permission. Many of the decisions that were made regarding Alice without her informed consent were related to her health. In this way, Zulus reflects on the radiation experiments performed on African Americans in the twentieth century. Harriet Washington’s book Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present illustrates how experiments such as these were administered by white scientists who failed to fully explain the entirety of the studies to African American test subjects so they could provide informed consent. The denial of informed consent to African Americans is not directly discussed in Zulus. In fact, with the exception of Alice’s lover Kevin Peters being identified by his African American heritage, the concept of race itself is never mentioned in the novel. Nevertheless, as an African American, Everett is likely familiar with the mistreatment of black test subjects by white scientists. His knowledge of discriminatory experiments using African American subjects could be inferred as the reason he chose to emphasize the issue of informed consent in Zulus.
In Zulus, Alice was subject to a medical procedure in which her informed consent was not acquired. When Alice was first summoned by the Body, the governing council of the rebel camp, Body-woman Rima determined that Alice’s pregnancy would be verified without first obtaining Alice’s consent. For example, regarding Alice’s pregnancy status, Body-woman Rima demanded, “…we must have validation. We will have validation.” Rima denied Alice the opportunity to agree to or reject the procedure. Yet even if the Body-woman had asked for Alice’s permission, the pregnant woman wouldn’t have been able to make an informed decision due to Rima’s failure to explain what the validation technique entailed. As a result, Alice was confused and uncertain of the procedure. For instance, she reflected, “…what form verification of her state might take, whether she would be subjected to intense physical examination, probing, and prodding or merely questioned about her perception of changes within her body…” Thus, the government of the rebel camp failed to protect Alice’s fundamental right to be granted the opportunity to provide informed consent before participating in any medical or scientific examination.
The blatant refusal to obtain Alice’s informed consent by the Body would alarm contemporary researchers who must comply with the 1947 U.S Atomic Energy Commission (AEC) policy on informed consent. Summarizing Washington’s description, the policy required that for research on human subjects to be conducted there must be a “reasonable hope” that the treatment “will improve the condition of the patient”, “complete and informed consent” from the patient in writing, and that the “…next of kin give in writing a similarly complete and informed consent, revocable at any time during the course of the treatment.” The AEC document was a watershed in federally mandated protections of patients’ rights. For example, Washington explained, “It [the AEC policy] is the first occurrence of the term informed consent in ethical policy…” However, Washington also indicates how unfortunately the AEC policy was not sufficiently enforced for many decades after it was first published. Despite the policy, researchers sought out marginalized groups, especially African Americans, as test subjects for life threatening experiments. For instance, Washington stated, “Between 1960 and 1972, University of Cincinnati radiologist Eugene L. Saenger, M.D., directed experimental high dose TBI on a total of 200 cancer patients, of whom 150 were black.” Subjects were falsely told that the TBI was being used to treat their cancer. Yet Washington elucidated, “By the 1940s, TBI was found effective against some radiosensitive cancers…but not against the localized, radioresistant cancers that Saenger studied.” Saenger divulged that the true purpose of the study was, “to obtain new information about the metabolic effects of total body and partial body radiation…” The experiment was not designed to be therapeutic, nor were either the patient or the patients’ families informed by the researchers of the study’s real objective. Thus, Saenger’s experiment violated all three tenets of the AEC policy and exploited a disproportionate number of unwitting African American subjects. Unlike the government Alice was under the jurisdiction of, twentieth century America ostensibly protected patients with the AEC document compelling informed consent. However, in many cases this policy was neglected, and African Americans primarily suffered as a result.
Fortunately, Dr. Ben Chapman’s and Dr. Don Schaffner’s Food Safety Talk Podcast Episode 163: “Grown on Chia Pets” and Dr. Chapman’s Skype call revealed that in the present day there are more stringent measures to ensure patients’ informed consent before their participation in a study. One of the primary means by which it is verified that experiments only pose minimal risk to research subjects is the Institutional Review Board (IRB). IRB reviews of experiments are particularly necessary when researchers are conducting deception studies, which are studies that intentionally mislead subjects to maintain objectivity. Researchers conducting a deception study are required by IRB protocol to fully inform participants of the purpose of the experiment after it is completed and to provide the participants with the opportunity to withdraw their data from the study at any time. With the implementation of the IRB, tremendous progress has been made in protecting patients and their right to provide informed consent before they are subject to any research studies.
The AEC policy enacted by the United States government provided apparent legal protection for patients that Alice in Zulus did not have access to. However, a legal protection on paper does people little good if it is not enforced. Thus, it was only with the implementation of the IRB that research participants, particularly victimized groups such as African Americans, were treated not as guinea pigs by researchers, but as human beings.