Category: McCoy 101 Fall 2019

All parents want their children to be happy and healthy. Harriet Washington, in Medical Apartheid,  states that the discovery that many human traits followed a Mendelian pattern of inheritance allows reliable predictions of the outcomes in the child. There are many genetic conditions that a child can inherit from its parents that may be fatal or very detrimental to its quality of life.  Eugenics, as defined by Phillip K. Wilson of Encyclopedia Britannica, is the “selection of desired heritable characteristics in order to improve future generations.” From this definition, it seems that Eugenics may be a scientifically beneficial approach to limit the amount of genetic-based disease in our society. Washington points out that “Eugenicists proposed that society use medical information about disease and trait inheritance to end social ills by encouraging the birth of children with good, healthy and beautiful traits.” In light of this quote, scientists could use knowledge to benefit unborn children so that when born are able to live healthy lives and avoid diseases that their parents may be carrying. With the use of genetic information, parents can be armed with the knowledge to make an informed decision on whether or not to have a child that may fall subject to genetic disease. So why is the practice of eugenics looked upon with disgust? It’s simple. Persons of power, as Washington puts it, “…confused the concept of biological hereditary fitness with those of class and race.”

According to Wilson, eugenics is commonly associated with practices that took place in Nazi Germany during the 1930s and 1940s. In Wilson’s article, the German government adopted eugenic practices of involuntary sterilization in order to build a master race. Wilson also points out that “…Germany extended its practices far beyond sterilization in efforts to eliminate the Jewish and other non-Aryan populations.” Hitler did not use eugenics to help limit genetic disease but instead as propaganda to galvanize his supporters in his racist efforts. Hitler would not be the only person of power that contributed to eugenics being used as a tool of racist oppression instead of medical benefit.

 Washington points out that Americans were being sterilized as well, as many as 4000 in 1934 alone. In America, 27 states had laws that provided for the “compulsory sterilization” of groups such as the “feebleminded, those on welfare or those with genetic defects.” (Washington) Like the Nazis, the American government officials were requiring sterilizations of groups of people without attaining any form of consent. African-Americans made up a large amount of those who were sterilized through legal means. Washington also explains that outside of the law that there was a common practice of involuntary hysterectomies and the practice was so common in Mississippi that is was referred to as a “Mississippi Appendectomy.” Atlanta’s Southern Poverty Law Center filed a class-action lawsuit that resulted in the discovery that “…100,000 to 150,000 women had been sterilized using federal funds and over half of these women were black.” Eugenics being used as a tool of oppression against certain classes and races and not as a tool to benefit society as a whole.

After investigating the past crimes committed in the name of eugenics, a thought occurred to me. I thought of genetic counseling and wondered about its relationship with eugenics. In a blog post, authored by Ricki Lewis Ph.D., it is argued that genetic counseling is not a form of eugenics. Lewis explains that genetic counseling includes genetic disease carrier and BRCA mutation testing for potential parents. Carrier gene testing can detect whether or not parents are carriers of hundreds of genetic diseases and advise them on the chances of their potential child inheriting these diseases. Mutant BRCA gene testing identifies if the BRCA genes for DNA repair are altered. If they are, future children would have greatly elevated risks of several cancers. Lewis argues that these types of genetic testing are not a form of eugenics for a simple reason: “…the important descriptor of eugenics is INTENT; that of medical genetic screening and testing is CHOICE.” In other words, genetic counseling differs from eugenics because it allows for informed consent. I agree with Dr. Lewis. The initial reason that eugenics was perverted into what it is known as today, was that people of power attempted to alter society through forced means. Genetic counseling takes the positive aspects of the eugenics and gives parents information in order to properly make a decision on whether or not to have a child. In addition, genetic screening is not mandatory and potential parents must provide informed consent before taking part.

One of the main goals of genetic counseling is to offer information about genetic diseases that would be passed down to children. Knowing this, I considered the children of the Clay’s Ark community in Octavia E. Butler’s Clay’s Ark. Butler describes Jacob as a “catlike” child who was quadruped and “built for speed”. The members of the community have a compulsion to breed children and thus have no interest in preventing the birth of their genetically altered children. However, Rane reacts to the child similar to that of a eugenicist, “What the hell are you doing sitting in the middle of the desert giving birth to monsters and kidnapping people?” Rane clearly believes that the birth of these children should be avoided. The community members have no possible way to control their births because they are controlled by the microorganisms that infect them regarding this matter. Even so, Lupe argues in defense of giving birth to children with the infection,  “Eli says we are preserving humanity. I agree with him. We are.” Butler is extremely talented at posing questions to readers that have no clear answer. Through this dialogue between Rane and Lupe, Butler provoked me to ask several questions of myself. Is Rane right to believe that these children are dangerous to the world and their births should be controlled? Even if the members of Clay’s Ark community could refrain from having children, would they give up their basic human right to reproduce? Would they be willing to give birth to a child that they know will carry the disease? She was able to trap me into thinking like a eugenicist and also a parent. Honestly, I do not know what to think of these questions and I believe that is part of Butler’s genius.

Assumptions are a part of everyday life. They transform and mold our decisions, interactions, and views of people and the world. In Butler’s Clay’s Ark, these judgements are made in what seems to be every aspect of the book. To start superficially, Blake, Rane, and Kerry were chosen as spreadable subjects for the sometimes-lethal disease. Why? Well the society of infected people made assumptions about Blake being a doctor with wealth and “knowledge” and decided that he would be a better carrier than someone from what Butler calls the “sewers.” An assumption that he would be a perfect subject to spread the disease because he could handle it better. How can one assume that because he went to school longer to be a doctor and was white that he would be a better carrier? Butler pushes not only the reader’s assumptions but the characters’ assumptions from the book as well. A stereotype that even caught me on the first read even though it’s proven that the virus shows no prejudice in it’s victims.

At the beginning of Clay’s Ark Rane and Kerry were almost immediately identified in their race, half black, and in conjunction readers assumed Blake wasn’t a racist man. I mean he couldn’t be right? How could a father of two black children possibly be racist? As easy as that assumption was, we must not exclude to notice that the disease carriers were racist in their choosing of the girls, waiting to test out different people to see who fared better after infection. Using their race as an excuse to further their knowledge of the disease was prevalent from the first chapter. This also appears in Washington’s Medical Apartheid, where black people, usually slaves, at the time of slavery were being used and abused to extract medical knowledge. Washington also notes that doctors even displayed their bodies being surgically operated on in front of an audience of people. Once black lives being unwillingly chosen to benefit the “greater” knowledge of others. 

In Butler’s Clay’s Ark, it seems Blake is just starting to get a taste of what black people might be facing in society’s judgmental eye when he is chosen by the infected people in connection with his daughters. He may have thought he knew what they were facing beforehand but when he is captured, Blake is most certainly learning what it feels like to be judged on his superficial appearance and he is clearly resentful of the infected people for it. The girls are asked about their race multiples times in the book as if they couldn’t possibly be Blake’s daughters. Butler states, “What kind of cradles have you been robbing, Doc?” The demeaning tone of this quote is undeniably racist and so is the infected man Eli. The subtle detail of Eli calling him Doc attempts to place him on a social pedestal above his daughters as if they couldn’t possibly have a father that’s a doctor. 

            I think the irony in this racism and particular choosing of people to infect is that those infected with the organism came together to combat the assumptions that others might make about them. Especially how others might view their children where Butler states, “What in hell was going to happen to a kid who ran around on all fours? A freak who could not hide his strangeness.” This is a hypocritical way of thinking since they attempt to convince others to give the infected people a chance and get defensive when questioned about their physical appearance, yet Eli clearly struggles accepting his own son Jacob. The infected people also contradict themselves by picking Blake to be infected because they believed he would be the best carrier possible based on socially constructed opinions of more education equaling a better life and overall better person. A strange judgement for people who want to delve past the physical appearance and be accepted for the people they are. Not only does Butler do her job to push the reader’s character building passed the superficial, but the reader must also do their job in identifying the assumptions they made and realize they may be just as imperfect as the characters in the book.

When people often think of others with AIDs, we think of them differently than someone without. We do not normally see them as we did before, in our eyes they somehow change. The same happens with those that have the Clay’s Ark disease, in the book by Octavia Butler by the same name.

Those with the Clay’s Ark disease are looked at differently, they have different abilities, or they look different. But, in reality, all of these people are the exact same, personality wise, as they were before. Personalities do not change because of a disease, their abilities might though. As when we discover that the children with the disease, namely Jacob who is Meda and Eli’s son, have advanced abilities. “Every child born to them after they get the disease is mutated in some way. … The way he moves- catlike, smooth, graceful, very fast. And he’s as bright or brighter than any other kid his age.” (Butler 512).

The same goes for people who have AIDs, they are still the same on the inside. The misconception that a disease changes a person completely is not true. Just because a person is acting slightly different, doesn’t mean they are different. Their personalities and their true selves remain unchanged. People just tend to act different because they know they have a disease, they are being affected emotionally, mentally, and often times physically as well. So they act out of character at times.

Often times people with AIDs are marginalized and targeted. “American attitudes toward people with AIDs have also mutated from protective to punitive” says Washington in her book Medical Apartheid. People have become less concerned with helping people with AIDs and more concerned with punishing them in some way.

By becoming more concerned with punishment, people see those with AIDs as different people because they think they are to blame for their own disease. Within Clay’s Ark, people are punished for having the disease, in a way. They are held in cells after unknowingly being infected, they are not allowed to see each other, even if they are family, as Blake is not allowed to see his daughters in the book.

Towards the end of Clay’s Ark Blake begins to act out, becoming more violent and yelling at his daughters, which he never does. This, we can assume, is the disease taking over, as we were warned at the beginning would happen. But the difference is that this disease is not a real one, and AIDs is very real. AIDs does not make a person act differently, nor does any disease, sometimes people just do not know how to deal with what they are going through. They act differently of their own accord.

Literature by Octavia Butler is quite digestible in terms of its format and the language it employs; however, as we have discussed in class, the underlying meanings of her work are anything but simple.  As an author, Butler continually puts readers in situations in which they are forced to recognize and challenge any preconceived notions they may have. In the novel, Clay’s Ark, Butler does just this: she writes what appears to be a typical zombie apocalypse novel. However, beneath the surface the infected individuals in her novel are being likened to bacteria. This analogy serves not only as a commentary on antibiotic resistance, but also as a warning regarding the current and future decay of our society—as well as an inkling of hope for reversing it.

Continue reading “Bacteria and Books: An Analogy of Antibiotic Resistance in the Literature”

There are two different ways you can read Zulus. One of which being, you can read each chapter heading/title. The other is choosing to completely skip over them. When I first started to read Zulus I ignored them and I only paid attention to them when it told me where to stop reading for class. It wasn’t until after a few class discussions that I went back and read them, and began to read them along with my chapters. After that, I started to piece everything together. I started to make connections, and I started to read the book a little more closely. When you look up the people, places, and dates in the chapter headings a lot of things start to make sense, but it also raises many more questions. I mean Chapter B tells you how the book is going to end! “Z is for Zulus” (21). The book title Zulus doesn’t really make much sense until you get to Chapter B where it gives a very brief history of the Zulus people and how they “fought for three hours, leaving three thousand Zulus dead” (21). It made me wonder if Everett chose them on purpose because their story was a brutal one, just like the history of the society in the book. When you get to Chapter I, the end of the heading says “I is for Imhotep”. I didn’t know who Imhotep was until Professor McCoy told us in class that he is often considered the father of medicine. I fact-checked this with an article I found, “Imhotep and Medical Science – Africas Gift to the World” by Don Jaide which said, “Imhotep was the world’s first-named physician”. NOW, put that into context with our book; the society in which Alice lived in had no medicine, so why is Imhotep relevant? What does he have to do with anything in the book other than being the father of the medicine that they DON’T have? The only thing I could think of was the irony behind this. The society has no access to medicine. After discussing in class one day, a few people brought up the idea that the reason they might not have access to it is so everyone winds up dying and the planet has the chance to heal from the disaster that struck.  It brings up the idea of our course epigraph again and how as readers, it’s our job to notice when the author embeds hidden clues and meanings behind things in their writing. It’s also our professors’ job, and also our own job to make sure we are noticing those things to better ourselves and our observing skills. Often times we overlook things that are right in front of our faces and don’t think about it because it either seems too obvious or because it is too sensitive and we don’t want to talk about. As readers, and as members of society we have to start being more observant of the things going on around us. We have to be more willing to talk about sensitive topics, the ones we don’t want to talk about if we are ever going to change as a society. 

Washington wrote in Medical Apartheid about how 42 years ago a man named Casper Yeagin vanished. His family had reported him missing, and after a few months of him missing and his family calling and visiting the cops many times, they finally found his body. Yeagins body had been awarded to a medical school to conduct research. They were able to find his body before they dissected him (115-116). Many people are unaware of situations like this that happened in our history. I didn’t know that was a thing until I started this class. It’s crazy to think that this happened only 55 years ago (the book was published in 2006, 13 years ago. 13+42=55). 55 years ago my grandma was my age, it’s crazy to think that this was happening during her lifetime. It’s sickening how many people turn a blind eye to things like this. We need to be better-informed citizens about our history, so we can make sure things like that never happen again. 

My takeaway from Zulus is to be more observant and to ask more questions in my day to day life. Not only will that make me a more informed citizen, but it will help me to educate other people. My future plan is to become a middle-high school English teacher and I believe that by being informed on all past and present topics I can better teach my classes and better shape the youth of America.

Making mistakes is a part of being human, but what happens when one is never given the opportunity to try (and occasionally fail) at life’s challenges? Shielding people may temporarily spare them from discomfort, but when does this act result in more harm than good? In Toni Morrison’s novel, Home, we see the aftermath of what happens when the constant protection of Cee, by her brother Frank, abruptly ends. A similar dilemma is not unfamiliar to countless medical students each year as they transition from the academic environment of medical school to the realities of residency. In both cases, I will discuss what happens when “protectors” are removed, how to learn from mistakes that have been made, and how to prevent them. Although in this post I liken Cee’s transition to independence to that of medical students, it is important to note that even though both parties share commonalities in their intelligence, motivation, and transition to more independent people, Cee and modern medical students also have very stark differences between their circumstances. In the novel Home, Cee is oppressed because of both her socioeconomic status and her skin color; she is in a vulnerable position not because of her personal qualities, but because of the systematic oppression of her society. There is no doubt that some people who practice medicine also endure these challenges today, but it needs to be noted that those who attend medical school have already achieved a level of social status and education that Cee did not have access to. To simply compare the two parties without acknowledging this difference would be unjust.

Continue reading “Mistakes & Medicine: How to Prevent and Address Medical Errors”

After having the privilege of hearing about the process of human scientific studies and the nuances of informed consent with Dr. Ben Chapman of North Carolina State, I was left with a troubling thought about what it means to be informed.  Chapman, in his podcast Food Safety Talk Podcast Episode 163: “Grown on Chia Pets”, discussed a particular participant that challenged the consent process of one of his studies.  The chief complaint of the participant was that he felt betrayed that he was not properly informed before taking part in the study. To avoid biased results, researchers often use deception studies. Deception studies, by nature, cannot fully inform participants on the true aim of the study. The question I was left with was: Should we allow deception studies to continue being used?

In Percival Everett’s Zulus, Alice is offered safety by being smuggled out of the city to a rebel camp by Theodore Theodore.  Alice consents. However, her consent is meaningless. When she consents the only information she was given is that Theodore Theodore says “I will do everything I can to help you”.  Later, Alice finds out that she will be subjected to imprisonment and a violating verification of her pregnancy. Although Alice provided consent by asking for help, she in no way consented to the horrible acts she would have to endure.  Alice was extremely uninformed and forced to suffer because of the deceit of the rebels. To properly consent, Alice needed far more information than what she was provided.  Alice was not informed of everything that she would later encounter and therefore is a violation of informed consent.

Harriet A. Washington describes another situation of uninformed consent in her book Medical Apartheid.  She recounts a story from Jesse Williams about participating in a footwear experiment that was really an attempt to induce a foot fungus that was extremely difficult to treat. “Investigators went to remarkable lengths to deceive inmates about the harms inherent in the tests”. This is clearly a violation of attaining properly informed consent. While Williams was prison he was never given a consent form. Even if he had the ability to consent to a study of this nature, he was grossly under-informed about the true nature of the study.  Williams experienced a lack of informed consent because he has deliberately misinformed about the aims of the study. He was also not aware of the risks that accompanied the true nature of the experiment. Williams’s lack of knowledge of risks and the true goal of the experiment would have prevented his ability to provide informed consent if he was given the opportunity.

Alice and Williams’s situations demonstrate a clearly unacceptable lack of information. However, deception studies also withhold information from participants. Deception studies are considered necessary and ethical in today’s human research environment.  According to the University of Wisconsin’s Health Sciences Institutional Review Board, deception studies are necessary in order to  “obtain unbiased data with respect to the subjects’ attitudes and behavior when complete or truthful disclosure is expected to produce biased results”. Human beings often aim to please, so if they know the aim of the study they tend to alter their behavior. The IRB of the University of Wisconsin indicates that researchers are allowed to active deceive and passively deceive research participants. Active deception involves providing inaccurate information to participants. Passive deception is intentionally withholding information that is vital to the study. Alice experienced passive deception because she did not fully understand what would actually occur at the rebel camp. Williams experienced active deception because the information provided was inaccurate to the actual details of the study. Alice and Williams both experienced deception in ways that current researchers utilize.

If the deception that was described in Medical Apartheid and Zulus was considered unjust, should researchers today be allowed to use the same methods? Yes, because there are oversight organizations that prevent deliberately detrimental practices. Chapman deliberately deceived his study’s participants by not disclosing that they would come into contact with non-pathogenic E.coli bacteria. I believe that Chapman was just in doing so because the Institutional Review Board protects participants. The IRB ensures that studies can only involve minimal risks to participants and risks described to the participants cannot inaccurately represent actual risks. In William’s case, the risks were not described accurately and thus an oversight board would have prohibited this study.  Institutional review boards also have provisions that force researchers to reveal the actual details of the study to participants and allow them to withdraw from the study and completely eliminate any data acquired. These provisions protect subjects from initially consenting and then not being able to revoke their consent. Subjects may not be fully informed at the beginning of the experiment but are completely informed before their information is used.

In an ideal world, deception studies would not be necessary. True informed consent is currently not a reality in human studies. Deception is required in order to gain accurate knowledge to provide a benefit to the population as a whole. As long as research participants are not being taken advantage of and only experience minimal risk, deception studies should be allowed to continue. In the case of Chapman, deceiving his participant was a source of great regret and felt that he personally had a responsibility to revise his study to avoid problems in the future even though his study held up to IRB guidelines. Researchers, like Chapman, act in good faith and are subject to many rules that ensure the full protection of participants. While willingly deceiving research subjects may seem in bad taste, it remains a necessity.

In the novel Zulus, we read from chapter A-Z instead of the customary 1-26; this is one of many conventions Percival Everett breaks in his writing. He uses this technique as an opportunity to provide various allusions that coincide with each chapter’s assigned letter. Take chapter I, for example: “I is for ichor. ‘… there is no soundness in it; but wounds, and bruises, and putrefying sores; they have not been closed …’” (Zulus, 111). I is for infection as well, and as I will explain, Ichor is the discharge that oozes from infected wounds. In Zulus, this infection is the rot and decay left behind by chemical and nuclear warfare. Two of the book’s protagonists try to eradicate this infection in very different ways: one by means of growth, and one by means of erasure. In our own medical system, we also have old wounds that need healing, and the choice is ours in terms of how to approach this challenge.   

Continue reading “Ichor: A Physical and Figurative Marker of Infection in the Human Body and in the Literature”