What is (Un)Informed Consent?

Adriana Straughter, Caitlin Morazzini, John Serbalik, Olivia Herring, Rachel Cohen, Semefa Agbokou

Informed consent is a challenge that the medical field faces every day. According to Harriet Washington, “Informed Consent is 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, why it is being proposed, and what the possible consequences the experiment carries” (Washington 55). As a patient continues their treatment, so should the communication between the doctor and patient. This includes full disclosure of the risks and benefits associated with the treatment. Your doctor should always be giving you the facts. This shows a level of respect, the doctor respects you and wants to make sure you can choose what happens to your body. Octavia Butler’s Clay’s Ark addresses the conflict of consent among infected characters. The novel’s infectious disease influences the ambiguity in how the character’s view consent because the novel lacks a definition of consent. Rather, they grapple with this issue by the information received about the disease and other characters.  

Blake is a white male doctor; the majority of his life has been comfortable when it comes to being apart of society. With Blake’s lifestyle, there was no need for his consent because he had the authority to make his own decisions. Now Blake has been confronted with a disease; without his permission, he has been given the disease. When given the information, Blake struggles with the reality of how it changes a person, and the idea there is no cure. But being a doctor, his main goal is to help and figure out what the purpose of this disease is and how to control it. He tries to grasp this disease by doing testing and figuring out the origin of the disease. With no luck, Blake ends up having the full effect of the disease, which leads him to have extreme altercations. With the disease, compulsion takes over, this brings blake to be verbally and physically abusive towards his own daughters who he adored and wanted nothing but to keep them safe before this disease took over. Towards the end,  Blake scratches an unknown man and spreading the disease and creating an epidemic. “ I did it. Jesus!… I grabbed him, I couldn’t help it, couldn’t control it. He smelled so.. I couldn’t help it. God, I tore at him like an animal… Please, Go after him. Stop him.” (Butler,618). At this moment, Blakes’s struggle with the disease has come to an end. He understands the decisions he has to make, his compulsion is very real and too hard to control. 

Eli was one of the first to have the disease. He struggles with informed consent when he infects Meda’s mother. He infects her without telling her. He then informs Meda about what happened to her mother. However, the family on the ranch has the symptoms of the disease before he tells Meda about it. Eli internally struggles with the idea of infecting Kiera with the disease, but he really does not have a problem with infecting others. Eli infects Meda without thinking and without feeling bad, so she does not get a chance at informed consent. Meda had absolutely no choice and most people in the book do not have a choice because they are not even aware of this disease until it’s too late. Meda had no way of knowing that Eli is infected and so when he scratches her and gives her the disease, she does not know anything happened until it is too late. After this, when Meda has the disease and survives it, she does the same thing to other people. She has no problem infecting others without their consent, even though she knows it is not fair, considering what she went through. 

Kiera is Blake’s daughter, she is sixteen and dying of leukemia. After being kidnapped, she is the only one not immediately infected as Eli is unsure if it will kill her or not. This allows Keira to have a choice in being infected. Eli, instead of infecting her himself, Kiera takes his hand and makes the decision to accept the disease. She knows the risks, she knows she may die, but she still chooses to be infected by Eli. When it comes to anyone in Blake’s family, Kiera is the only one who comes closest to having informed consent. She, once more, knows she may die, she knows she could become sicker than she already is, and she knows if she does live, she will no longer be human. With all of this in mind, she makes the decision on her own, doing what she feels is right for herself. While her father or sister may see it as the wrong choice, this highlights the idea that each person should have control over their body and their choices. Instead of Blake, her father, making a choice he believes is the best for her, it is Kiera making the choice for herself. Consent means that you can make a choice based on the information provided to you and on your own values because it is your own body. Blake does not believe in the disease, he does not believe they can make a cure, and he believes he has to protect his daughters from horrible things, including this disease. But when Blake does this he ends up taking away Rane’s or Kiera’s ability to consent for themselves. Butler shows that consent also involves the making of a decision for yourself, through Kiera. 

Informed consent in the book is important, but not acknowledged. The characters struggle both individually and collectively with the idea of informed consent. We see each character’s individual struggle, as shown above, as well as a collective struggle to inform those who were kidnapped, of the disease. The Clay’s Ark community, as a whole, does not give informed consent to anyone who is new to the community. They do not explain the disease, how it is contracted, or what it can do to the person who is infected. They only explain after the fact, when they already have the disease and it is too late to back out. If they had given informed consent, there would have been an option to back out from getting the disease. However, because informed consent or any consent was not given, there was no option to opt-out. The idea of consent within the Clay’s Ark community is also shown to be based on who has information and what they do with it.  This is shown in how Meda only gives Blake some information, and only after he has been infected. The same thing happened when Eli infected Meda. Becoming informed of what may happen to you only comes after one is given the disease, and in turn, their ability to consent is taken away. If you are not informed of something until after it has been done to you then you are stuck with it. All these people are stuck with this horrible disease and they try to justify it by telling them afterward. There is no justification in this because there was no consent.

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