By Ashley Hausrath, Kat Johnson, Michael Meegan, Joey Luconte, Bryan Wager, and Anonymous
In class we’ve discussed the importance of consent and informed consent in particular; informed consent is important because it shows respect to other individuals. Washington also addresses informed consent in Medical Apartheid, particuarly as it relates to the medical field. Washington quotes Dr. Sadiq Wali, who served as the chief medical director at the hospital where a nonconsensual experiment took place, when explaining informed consent: “‘(informed consent in medical parlance) has to do with the patients being told the good as well as the side effects of the drugs to be administered’” (Washington, 392-393). Here, Dr. Wali (and Washington) seemed to indicate that for there to be informed consent, one needs to enter the situation as someone who is “informed,” meaning that they enter the situation knowing all relevant information regarding risks and rewards, and have the ability to remove themselves from the situation if they feel necessary.
While Washington argues that all necessary information needs to be provided beforehand, Butler’s Clay’s Ark provokes its readers to question Washington’s definition. In “Present 4,” Eli tells the Maslin family: “‘We [the Clay’s Ark community] got together and decided that for your sake and ours, people in your position should be protected from too much truth too soon” (Butler, 471). The Clay’s Ark community fears that giving outsiders information about the organism too early would scare the outsiders and make them take drastic actions to escape. In a way, this makes sense because if Blake and his daughters get violent, the Clay’s Ark community may be forced to hurt them to prevent the spread of the infection. It can be justified as a protection, rather than as a withholding of information from the outsiders. Lupe argues this point in her conversation with Rane. Lupe had originally stated they weren’t going to hurt Rane, but she warns Rane that her “hostile” behavior will force them to hurt her: “‘You’re going to fight us every chance you get, aren’t you. You’re going to make us hurt you’” (Butler, 521). If the outsiders begin to act violently or manage to escape, the community will need to use violence to either subdue or kill them before they can start an outbreak. So it seems as if the Clay’s Ark community chooses to withhold information for the sake of safety for those outside of the community—a choice that they believe to be the lesser of two evils.
We’ve dealt with a similar issue in class before while discussing deception studies with Dr. Chapman. In our Skype call with him, Dr. Chapman explained how deception studies are necessary because individuals might be more likely to align their behavior with specific results if they are given all of the information. We can see here that knowing certain information or providing too much information at a certain time can lead to different results and reactions by the participants of the study. Researchers who use deception studies are employing a similar technique to that the members of the Clay’s Ark community; they withhold certain information in order to guide reactions. For the researchers, withholding information allows them to get genuine and unbiased data for the improvement of public health; meanwhile, the Clay’s Ark community thinks that withholding information will help protect against the escape and uncontrolled spreading of the organisms. Both situations reflect how releasing too much information at one time can lead to more problems not only for those in power but for the vulnerable as well. Particularly for the Clay’s Ark situation, the side effects are extreme and might justify their giving consent at a controlled pace.
At the same time, not providing information to those entering the situation before they enter it would be considered a violation of informed consent. Washington says that informed consent consists of giving all individuals that are involved information about both the risk and rewards of a situation, and she’s depicted the extremes of how violations of informed consent negatively impact individuals. This is also reflected in Clay’s Ark itself: Keira seems to disagree with the community’s decision, for after Eli speaks to them, Keira tells him that “not knowing is worse” and they would try their hardest to escape regardless. Even Eli himself disagrees with withholding information, for he tells the Maslin family that he was the “minority of one, voting for honesty” (Butler, 471). Through the characters’ disagreement, Butler makes us think about an interesting question: is it ever right to withhold information (not have informed consent) if it would be safer? In analyzing this question, our group noticed that both the Clay’s Ark community and deception study researchers might rely too much on assumptions when making decisions about consent. Deception studies operate under the assumption that every participant would react in a similar way, that they would all be alright with being given the information after they’ve went through the study. As told to us by Dr. Chapman, this wasn’t the case, for one participant felt that their consent was violated because the information was withheld. In the same way, the characters in Clay’s Ark are making decisions about informed consent without knowing fully about the situation. The Clay’s Ark community assumes that giving information later (once the organism has taken a better hold) is the better option because it lessens the chance of violence and don’t really consider that individuals in the other situation would want to know more and know beforehand. This is particularly important considering every member within that community was put in the same situation when they first entered. They’ve all experienced being on the other side and feeling that “not knowing is worse” and yet choose to withhold information anyway (Butler, 471). The community is operating under the assumption that these individuals would accept this information being withheld as protection. Eli, the only Clay’s Ark community member depicted in the book to disagree with the withholding of information, references this. When Blake insists that he would be able to help the Clay’s Ark community despite Eli trying to tell him otherwise, Eli says “‘Assume that I’m at least as complex of a man as you are” (Butler, 471). It’s perhaps significant that Eli, the “minority of one” who voted for honestly, mentions assumptions and how acting with limited information can be destructive and wrong. Ultimately, it seems as if Butler leaves the issue about withholding consent unanswered but urges individuals to act with as much consideration as possible and not to assume. Consent is a process that involves the decisions of the individuals who are being acted upon, so it is important to consider how those individuals would feel about the situation. There needs to be less assumptions and more attempts at understanding the situation and the individuals as a whole.