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.