Humanity’s Vital Role in Informed Consent

Written by Kaysen Bickel, Andrianna DeHart, Noah Lieberman, Julia Ophals, and Ariana Vidal

In Medical Apartheid by Harriet Washington, she states that informed consent is “…not a signed piece of paper, but rather the fluid and continuous process by which research informs the subject detail of what he or she proposes to do, why it is being proposed, and what possible consequences the experiment carries” (Washington, 55). Washington further explains that with informed consent, as the study proceeds with alterations, the researcher must allow the subject to withdraw from the experiment at any point (Washington, 55). By this definition, our understanding for what constitutes informed consent can begin to form. However, the nature and importance of informed consent may only be obtained after understanding what it is not. In Octavia Butler’s Clay’s Ark, consent is never directly defined, yet she outlines many experiences where it is lacking and presents itself in a format comparable to a deception study.

The definition of informed consent derived from Washington applies to those who possess humanity. Once humanity is removed, consent no longer exists. Within Medical Apartheid, researchers whose main goal is to obtain data lose sight of their subjects as humans and view them merely as a statistic. For instance, in 1932, a large group of African American males were utilized as an ongoing statistic in the Tuskegee Syphilis Study by the U.S. Public Health Service (Washington, 157). These males were denied informed consent by the PHS as they were deceived from the beginning to the end of the study (Washington, 157). At this time in Alabama, it was promised that those who were ill and tested positive for “bad blood” (CDC) would receive free healthcare. The term “bad blood” had no true definition, as it could entail testing positive for anemia, syphilis, or a number of other illnesses. The group that had “bad blood” were studied together, allowing those with syphilis to be in contact with those who merely had anemia. The men believed that they all shared an illness, being unaware of the risk of infection. Not only were they misled in the beginning with their false diagnoses, they were also never treated. The men with syphilis continued getting worse, and those who did not have it, contracted it. Meanwhile, outside of the study, penicillin was determined to be the leading treatment for syphilis, and these infected men were never to receive it. 

Not only were these men unable to leave the study and seek actual treatment, the subjects were never informed of this being a study to begin with. Believing that they were simply being helped, the men would not have known to seek treatment elsewhere, enabling the researchers to contain their subjects. Overall, the men did not know they were participants in a study, were at risk for infection of syphilis, and were not being properly treated. At no point was informed consent present, therefore no permission could have been given. Even after the men in the study died, their bodies were autopsied to see the progression of syphilis. They were consistently deceived throughout the experiment and into their deaths with no means of escape, serving solely as a statistic for PHS researchers. As the experimenters were driven by their mere need for data, all humanity dissipated, and informed consent could never surface. 

A similar narrative is seen in Clay’s Ark, where the characters battle with consent and whether or not it can be given when aspects of their humanity are lost. The infection the characters contract diminishes their human characteristics. As explained in the text, “The disease doesn’t go away. It just settles in and stays with you and you pass it on to strangers and to your children” (Butler, 525). The disease kept them from controlling parts of themselves after infection. It came from a different planet which resulted in inhuman symptoms. From the perspective of an infected character, Butler writes, “We’ve lost part of our humanity. We can lose more without even realizing it” (Butler, 543). As a result, they display animalistic tendencies and their children seem to almost become animals all together. The book emphasizes these characteristics stating, “The baby, when it came, looked like a gray, hairless monkey,” (Butler, 585). These traits further the idea that humanity is lacking, meaning consent is lacking as well. The book characters attempt to contain the diseased in their enclave, however, they constantly fear and plan for the incident of its spread into an epidemic, fearing that all humanity would be lost (Butler, 583). The infected were unable to give their consent and were left with only the choice to live or die. While they seem to have this choice Butler notes, “You think you can choose your realities. You can’t” (Butler, 522). The lack of options available to Butler’s characters is similar to that of those in the syphilis experiment in Medical Apartheid. The participants were unable to choose their realities as they were misinformed throughout the process of the study with regard to their diagnosis, treatment, and overall role in the experiment. To give the patients a fair choice and treat them humanely informed consent must be provided and the patients should be able to retract it at any time. 

Washington states, “research is an utterly essential and desirable component of treatment, but its subjects must be aware that they are participating, must be informed, must consent, and must be allowed to weigh the possible risks and benefits” (Washington, 7). A deception study, classified as research is where participants are deceived in order to obtain unbiased information. Therefore, the full knowledge of the study required to give informed consent is revealed only after the experiment has been conducted. Due to this, true informed consent cannot exist in this type of study. How can someone back out when the damage is already done? In Washington’s Medical Apartheid, the scientists at the time were using human test subjects to observe the effects of radioactivity on the body. Washington recounts the story of a man named Cade who arrived at the hospital with severe injuries, and doctors did not think he would make it through the night. With this in mind, they injected plutonium into Cade WITHOUT his consent in hopes to study its effects on his deceased body. Plutonium is described as a “fiendishly toxic, man-made element [that] is medically devastating because it causes cancerous changes in bodily tissues by ejecting high-energy alpha particles from its nuclei” (Washington, 444). This case and many similar to it, can be associated with the Tuskegee Syphilis Study. In these cases, patients thought their doctors were treating them and caring for them when in reality they were deceiving them as they conducted research without their knowledge. In these cases, the effects of the research could not be reversed, which killed many people. The participants in these studies could not withdraw themselves because they did not know they were being experimented on. As Washington states that for informed consent, the researcher must allow the participant to withdraw at any point, and in both of these cases that was not possible (Washington, 55). 

A similar theme runs rampant through Butler’s Clay’s Ark, much like the virus; once transmitted, there is no turning back. The characters of Clay’s Ark, Blake and his daughters, were ambushed by those from the enclave while traveling down a desert road. The infected individuals, such as Meda and Eli, took them back to their enclave where the majority of the text takes place. They expected Blake to be willing to come with them and help yet revealed no information about what it was needed for. No one from the enclave was willing to explain the circumstances because they knew they would try to escape. Blake and Meda have a conversation after she has infected him without his knowledge: “It’s a disease, she said. Have I been infected? She turned her head to look at him, smiled sadly. Oh yes” (Butler, 485). Meda continues, “She lifted his right arm, exposing the bloody scratches she had made” (Butler, 486). The deception used by Eli and the others is purposefully employed knowing well that after they revealed that Blake and the girls were infected, it would be too late for them to turn back. Those of the enclave infected a few to benefit what they viewed as the greater good. A trial such as this is to derive greatly desired data is seen to be yet again completely unethical; it leaves its participants with irreversible effects.

In the context of our course and the grand scheme of things, understanding the nature of informed consent is crucial for building a set of governing values and principles to guide us through life without doing harm. When we find ourselves in the positions of power that come inherently with the role of being an experimenter, it is of great importance to ensure that those involved are being treated properly. Care must be taken to make sure the experiment will at no point deprive participants of their humanity. The importance of viewing test subjects as human beings rather than variables in an experiment must be foremost in the mind of the researcher. If this perspective is compromised, harm is inevitable whether it comes as the result of carelessness or deliberate cruelty. There is very little difference between the two for someone who has been harmed as a result. 

Trust must not only be given, it must be rightfully placed and maintained. Without ensuring that consent is being provided from a place of understanding, abuses to human rights are bound to occur or be perceived to occur by those who have been experimented on. By entering a study, participants place a level of trust in whoever is conducting it. If that faith is abused, taken advantage of, or exploited against the best interest of the participant, trust can be lost along with consent. As Washington states, “Informed consent [is] revocable at any time during the course of treatment,” and the patient should leave with no long-lasting harm done to them if or when such consent is revoked (Washington, 232). Though a person may voluntarily submit themselves for experimentation, ethical research demands their ability to back out. Informed consent is procedural and sustained, not given once irrevocably.

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