The idea of informed consent, and whether or not it is being administered, is a complex concept that is constantly adapting to society’s ever advancing expectations. As a result, researchers and physicians are continuously evolving their methods of obtaining consent from their subjects in order to better communicate the risks and situations that they are going to be a part of. In a class skype conversation with Ben Chapman, a food safety specialist and researcher, he shared a specific instance in which a research-subject felt that he had not been fully informed of the elements involved in an experiment. Due to the subject’s lack of medical background, he was alarmed when informed after the fact that he was in contact with a “non-pathogenic” bacterium. Chapman, who is well-educated in the medical field, was aware that “non-pathogenic” means a bacterium is harmless to be in contact with. However, the subject was unaware of this definition, and in response acted with anger due to his lack of knowledge on the subject. This enraged response was triggered by the fact that the subject was a caretaker for an individual with M.S.; in being so, he consistently needed to be cautious of the germs that he could bring home in order to avoid putting his family member in harm. In light of this situation, Chapman became aware that he needed to change and review the way he received consent from the participants in his study, and additionally needed to work on making sure the subjects fully understood all parts of the experiment, not leaving any elements up for interpretation.
Looking at Ben Chapman’s process in dealing with his research subjects, it is easy to create a parallel to Alice Achitophel’s experience with the rebels in Percival Everett’s “Zulus”. Alice lives in a dystopian, post-nuclear war society, where it is no longer legal to have children. As a result, all women are forced to be sterilized. However, Alice manages to fall through the cracks, failing to be sterilized. In a violent sequence of events, Alice is impregnated against her will, left hopeless and unsure of how to hide her pregnancy from the world (since it is outlawed). Due to these circumstances, Alice places all her trust in the so-called “rebels” and she flees her home to reach a rebel-base outside of the city. Fleeing the city, Alice is unaware of the true intentions that these rebels have for her and her unborn child – yet naively she blindly follows Theodore Theodore and Lucinda Knotes (known rebels) to the base. There are several occasions where Alice is treated like an object/data specimen rather than an actual living human-being, most memorably when she is first examined by the physicians of the base to determine whether or not she is actually pregnant:
“Alice Achitophel leaned back, the lanky man taking her legs and raising them onto the table. The woman unlaced her shoes and removed them while another doctor switched on the examination lamp and rolled it to the foot of the table. The doctors all stepped back, fanning the air and saying “Oh, my. Oh, my” … her (Alice’s) words went unnoticed, unheard and the doctors continued to make a fuss about how bad she smelled, and one even conjectured that her malodorous condition was a side effect of her pregnancy… “It’s just this woman is filthy…”…They put Alice Achitophel’s naked feet into the holders and stood between her legs, moaning and complaining even more loudly…it was no longer funny and she began to cry out loud, but, like her words, her sobs went without note” (Everett 89-90).
In this intensely uncomfortable scene, we witness Alice being treated like an animal, wrestled and ridiculed as if she cannot even feel or understand. It is evident that the rebel doctor’s only concern was for Alice’s unborn child, not Alice herself; viewing her as merely a “vessel” that was to deliver the miracle child. As described by Ben Chapman, this is often a flaw in human-subject based studies, as researchers can often become single minded when looking at their subjects, viewing them merely as data on paper rather than actual people with emotions and connections. This fact is at the crux of what causes Ben Chapman’s incident with the subject who becomes infuriated due to miscommunication and lack of understanding. Responding to the situation, Chapman consults the board of his study, and urges that they change the consent/information papers given to the subjects at the beginning of the study. Unfortunately for Alice, the rebel doctors do not share Chapman’s immense concern with obtaining consent and informing his subjects. As a result, Alice is consistently ignored, and her valid questions and concerns are brushed aside, as they are meaningless in the grand scheme of what the rebels plan to do with Alice’s child, a plan that is kept completely secret from Alice herself.
Chapman goes into great detail when describing his method of research, which involves withholding specific information from the subjects in order to remove bias from the study. This method of study is extremely relevant to Alice Achitophel’s situation as Alice is constantly tragically uninformed about the events she is about to endure. This lack of information, and naivety at times in Alice’s case, is what leads to an extreme series of events were Alice’s body ends up encased in a glass box for the world to observe and gawk at like a scientific specimen. This act of being encased in glass reveals Alice’s true worth to the individuals in the rebel base. Rather than treating Alice like a person (where it is the custom to bury the dead), they instead encase her in glass to be observed by all:
“She was in her body, in the Flesh House, set down to just stare at the walls of her insides, at the petrified organs frozen in mid fester…There was so much light, more light than any daytime offered, shining on her and making everything all to clear too see.. She hoped she would fill the cube with her salty tears and drown her vision away from the view, but she could even live as a severed head, so she would not drown” (Everett 85).
This is all done horrifically without Alice’s consent. Delving deeper, it is imperative that we discuss how Everett fully attacks and quite literally “explodes” the entire conception of consent by having Alice be ever aware and conscious of what is done to her body, whether she is alive or dead. Although Alice’s body is scattered in pieces after her unnatural, self-explosive birth, her head somehow manages to remain intact. In a nightmarish depiction, it becomes evident that Alice’s head still remains conscious despite being completely decapitated from her exploded body; Alice is able to perceive and interpret everything that is occurring around her, yet she is unable to respond or make remarks to defend herself. This graphic and surreal situation creates a vivid visual of lack of consent that is truly terrifying. Alice is very conscious about the wrongs being done to her, and assaults against her body, yet she is forever unable to consent to or help her situation, never being put to rest.
In discussion, we can compare this situation to the immortal cells of Henrietta Lacks. After her passing due to a rapid cancer, without her or her family’s consent, doctors began using Henrietta Lacks’ ever-reproducing cells for research and medical experimentation. This real-life situation can be compared to Alice’s ever living conscience even after death, her soul never really being put to rest. Looking at it from this perspective, it is impossible not to question the ethics involved with the continued usage of the cells of Henrietta Lacks’ even after her death, her DNA forever living through scientific experimentation without her true consent; just as Alice is forever conscience, left in a deserted world with only the memories and facts that she learned over the course of her lifetime, from A-Z.
How is it that we as a society are so able to put aside an individual, and demean them for our own gain, despite the consequences to that individual or those connected to them? This pattern of non-consensual doings has been repeated throughout time, so much so that several authors, such as Percival Everett, have incorporated these violations into their own literary works. Although “Zulus” is a surreal fiction novel, its concepts and issues can be compared to several tangible real-life situations such as the immortal cells of Henrietta lacks, and even the research studies of Ben Chapman. Just as Chapman recognized that something needed to be improved and changed in his own studies, it is important that we as a society learn to recognize when we need to evolve. Thus, breaking the pattern of seeing merely zeros and ones, when we should be viewing a living human being, with thoughts, emotions, and a free will.