(Un)Informed Consent: Examples & Consequences

Written by: Katie Barry, Zach DeGraff, Matty Jackson, Courtney Lyon, Nina Mustico, Emily Vesperman

The topic of informed consent versus uninformed consent is repeatedly brought up throughout Clay’s Ark, whether it is mentioned subtly or outright. We are able to ground the differences between informed consent and uninformed consent in Harriet Washington’s Medical Apartheid. She defines informed consent clearly as “not a signed piece of paper, but rather, the fluid, continuous process by which a researcher informs the subject in detail of what he or she proposes to do … and what the possible consequences the experiment carries. The researcher must continue to inform the subjects of developments in the experiment that could affect him, and the subject may withdraw from the experiment at any time” (Washington: 55). In the case of informed consent, a subject must be aware of what is being done to them and why it is being done. If they are not provided with this information, it can be said that they do not have proper informed consent. Also, if the person involved in the research is not updated on what each step means, they are not providing informed consent, because they do not have the information needed to consent. In certain cases, such as in deception studies done by Dr. Ben Chapman, institutional review boards seek to provide an environment where test subjects are able to give informed consent according to the review board’s standards, but there can still be moral objections to deception studies as a whole. While this could be debated, the difference between informed consent and uninformed consent as a whole is clear. A person is able to provide consent without fully knowing what they are consenting to, but this by no means is adequate. The process of informing a person in order to get their consent is the principle that differentiates the two. 

In Medical Apartheid, the difference between informed consent and uninformed consent is essential when trying to understand the circumstances under which oppressed groups, such as black people within the U.S., have been subjected to medical testing. While there are many examples of people being tested without their consent or knowledge, there are also examples of black people being used for research studies where they provided their consent, but without truly understanding the study and what it entailed. By obtaining a person’s consent without giving them all the necessary details about what they were consenting to, researchers were able to do a great deal of harm while acting as though they had justification, since the subjects had given consent. As informed consent has become mandated by institutional review boards and other professional gate-keepers, the lack of information provided to people who were previously subjected to research comes off as more concerning than it has previously. It is through this historical framework that we can view Clay’s Ark and understand why the difference between informed consent and uninformed consent has such a big impact throughout the book. 

Within Clay’s Ark, there were many points throughout the story where characters had struggled with informed consent, or the lack thereof.  The storyline of consent had begun with the initial kidnapping of Blake and his daughters, Rane and Keira (Butler 461-474).  Although this scene is not rooted within the medical field, it is still deeply related to consent in general. This event shows the primary theme of the book, and the use of weapons during the scene can be interpreted as illustrating the inherent violence throughout the story. Once Blake and his family have been kidnapped, they are taken to a hidden cabin which plays as the second site of informed consent within the story.  The disease that people within the cabin have become infected with assists the idea of informed consent and consent in general; the people who were infected never had a say in whether or not they wanted to be taken over by this unknown, untreatable disease. In the book they are being driven by this disease that has essentially taken over their lives and gives them this sense of compulsion to infect others, which they did not want to do; consent was never given by the infected to the disease itself. In the story, Blake was compelled by the infection to attempt to assault his daughter Keira and, later in the book, he is driven to scratch a truck driver in order to spread the disease, thus showing the compulsion’s strength and effects of the disease on humans. The book itself is concerned with free will in general and practically says: if people who are infected with the organism aren’t in control of their actions, how can they be blamed for what they do?  Eli in particular makes it known to all how difficult it is to overcome the compulsion to spread the disease and to maintain their sense of humanity that has been threatened by the disease compulsion. He speaks for Ingraham at one point and says that the reason he shakes is because he is keeping the compulsion inside himself and not infecting others around him. It just goes to show how strong this compulsion from the disease truly is and how much one has to do to themselves in order to not harm others.

Eli was the initial person to be infected by this disease and ended up living with it unlike his deceased former crewmates; he demonstrates a complete lack of informed consent since he had no choice as to whether or not he wanted to be infected with this organism. At one point in the story, Eli makes a statement to Blake hinting at the idea of informed consent purposefully not being used for the sake of everyone involved: “We got together and decided that for your sake and ours, people in your position should be protected from too much truth too soon. I was a minority of one, voting for honesty. I could have been a majority of one, but I’ve played the role long enough. The others thought people like you wouldn’t believe the truth, that it would scare you more than necessary and you’d try harder to escape” (Butler 478).  By Eli saying that initially informing them is dangerous from a pragmatic perspective, since it is believed that they will try to escape, it shows how the lack of complete information being provided may be the better option in certain situations—in the mind of the people infecting others. Despite the intentions of Eli and his community, Blake and his family still attempt to run away, which eventually leads to the global spread of the disease. Although Eli has a compulsion to spread the disease and cannot control his actions, he is able to share the knowledge of what exactly the disease is, and he chooses not to. It should be noted that in a professional scientific study, informed consent is essential so people can decide if they want to participate or not; in the novel this is clearly not what occurs. 

Later in the story, during Eli and Meda’s discussion of why he did not turn himself in, he muses, “Why was he not dead in an escape attempt? And considering the loss of the ship, its wealth of data, its frozen, dead crew, and its diseased, living crew, debriefing was a laughably mild name for what he would have been put through” (Butler 493). This is where we see the effects of proper consent in action; Eli believes he immediately would’ve been experimented on with or without his own permission due to his infection with the organism. Another example of the effects of nonexistent consent in Clay’s Ark was when Blake was first infected. In the novel, Meda attacked and scratched him, although he did not understand that when she scratched him, he was immediately infected with disease, “Meda brought Blake his bag when he asked for it and permitted him to examine her. She even permitted him to cleanse the scratches she had made on his arm and face, though she warned it would do no good. It had never done any good before when someone was infected, she said. The organisms were aggressive and fast. He had the disease” (Butler 495).  Blake’s condition as “diseased” is permanent and there’s no way of fixing what he has been forcefully given. Eli and the others attempt to inform people about what is happening in terms of the disease process throughout the text. Meda and Eli tell everyone who is infected all of the information they know about the disease, how it spreads, how to prevent dying from it, and its effects on you and your offspring, but they only do this after they have already been infected. They allowed Blake to study the disease using his medical bag; however, they ignored the fundamental part of this process, which is consent. 

In the novel, Clay’s Ark irony is shown when Blake does not provide an oppotunity for Smoke to consent to having sexual relations with him because he never told her he has a transmittable disease. Blake should be an expert in the practice of giving informed consent because he is a doctor, but he fails to inform the woman that he is infected with an extraterrestrial disease that can be transmitted through sex (Butler 587). Blake theoretically should have given informed consent of the risks associated with being in contact with a diseased person like himself. However, Blake’s free will is potentially compromised because of the symbionts coursing through his body. When Blake is at a vulnerable stage of the disease transmittance, Meda watches over him and gives him the rundown of the present research information available for understanding the nature of the disease. In this open disclosure, the researched knowledge is made available to Blake, and part of this research has uncovered that “they get into the brain cells too” (Butler 498). The concern of the disease infected persons’ free will is recurrent and is definitely at the forefront of Eli’s mind through the course of the story. Providing informed consent on the part of the diseased individuals is compromising, and leads to infected people to be looked at as menacing by those who are uninfected. The fact that their ability to provide informed consent is broken has the potential to lead uninfected people to abuse the loophole of consenting privileges or restrictions. As a result, the uninfected feel justified to expedite measures to conduct experiments that are exploitative by disregarding informed consent. 

In Clay’s Ark we are provided with situations in which Blake and his family members do not consent to being infected by the organism, but once they are infected they are given the empathy and support of the community, as well as information on the disease process and how the community works. In Medical Apartheid, the opposite takes place and we are provided with many examples of times that “consent” was gained, but this consent resulted in the harm of patients because the full information and true intent of the procedures was not provided. One example of this includes that of prison experimentation. It is mentioned in the text that many prisoners were given incentives (such as money or a safer environment to live) in exchange for participation in phase one research studies (which are often risky as they test whether or not drugs are safe). We come to learn from the text that the releases and waivers research subjects signed were often vague and misleading, but regardless of this people harmed in studies could not sue because “consent” was given. This, however, was not true informed consent. As it was mentioned, these people were often deceived and misled in order for research to occur: they were agreeing to something but not being provided the proper information. This had disastrous effects. The example of Jesse Williams is brought to our attention as he describes his many scars and chronic health problems after inhaling pathogenic vapors, after having cadaver tissue put on his back, and more during his time in prison.

This discussion is important for the many reasons stated in Medical Apartheid; “blacks were made subjects of experimentation that served to denigrate their intelligence or to provide distorted justifications for their enslavement. Groups of vulnerable blacks, including children, soldiers and prisoners, have been consistently targeted. Both the federal government and private corporations have devised large-scale research abuses that range from radiation experiments to biological-weapons development. This medical ill-usage has not strictly paralleled scientific knowledge: Rather, it has mirrored the larger American cultural beliefs as well as politics and economic trends” (385). Uninformed non-consensual experimentation has been used for political and economic gain and has reflected cultural beliefs rather than actual scientific knowledge. The data derived from experimentation, therefore, has been used to assert certain things, e.g. blacks are inferior in myriad ways, blacks ought to, or can justifiably be, slaves, etc. The data informs the layman’s views (including prejudices) towards those who have been experimented upon. The exportation of medical experimentation from the US with its strict ethical policies to Africa and other resource-poor countries allows researchers to sidestep informed consent, leading to double standard-derived inconsistency (see: Dr. Francis D. Moore’s complaint in 1964, p. 395 MA, as well as the medical journal study we read). The discussion of these things helps people become aware of them and to deal with them in a useful and meaningful way. Someone who has been victim of a lack of informed consent can find solace in other people’s experiences, or their distrust of doctors generally. Also, the distrust of doctors by people they know can be understood through knowledge of historical context found in Medical Apartheid, and through the themes in Clay’s Ark. Ultimately, it’s important because it affects people. It affects how they think and feel and behave towards others, and human behavior can be changed, especially when it’s understood. Through understanding the historical context we’ve seen discussed in Clay’s Ark, Medical Apartheid,Fortune’s Bones, etc., we can become more conscious and cautious when participating in trials, or, more broadly, when there is ever a question of consent (informed or otherwise) generally.

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