Much like Bryan, who addressed consent in deception studies in the “Uninformed Consent?” blog post, I also struggled with the complicated issue of whether informed consent within deception studies is possible. I found a parallel between the initial state of ignorance (“uninformedness”) in deception studies to that of the Maslin family when they first received the Clay’s Ark organism. As explained to us by Dr. Chapman in our Skype call with him, participants in Chapman’s deception study did not know that they had been exposed to a non-pathogenic strain of E.coli. When Meda initiated contact with Blake (by grabbing his wrist), he had no idea what she had exposed him to. So then what happens in cases like deception studies, where results can only be trusted with a level of deception (which requires a state of not knowing), and in cases like the Clay’s Ark scenario, where the organism makes consent more or less impossible? What do we do when we have a violation of informed consent?
The difficult part about deception studies is that there needs to be a level of deception for there to be accurate results, meaning there often needs to be a violation of the initial informed portion of consent. In Dr. Chapman’s study, the participants are only informed of the true nature of the study after the experiment has taken place. The participants consented to being in an experiment and were given the opportunity to withdraw their data; however because the consent was given based on the understanding that a specific experiment would be performed and another experiment (that was not specifically agreed to) was performed, I don’t think the participants started the experiment with informed consent. Deception studies therefore require a level of uninformed consent to work. This might paint deception studies in a bad light, but all academic affiliated deception studies are monitored and approved by the affiliated university’s Institutional Review Board, which, as Bryan argues, “ensures that studies can only involve minimal risks to participants.” This is why I think deception studies (as long as they are carefully monitored and comply with rules) can continue despite the misinformation involved.
Although nowhere near as safe and as consensual, the Clay’s Ark organism is “similar” (and I use that loosely because those involved in the Clay’s Ark community aren’t allowed consent to leave as opposed to those in the deception study who have consent to withdraw data) in that informed consent is nearly (or maybe completely) impossible. The organism makes it so that the hosts need to spread it. It’s as Eli tells Meda when she accuses him of wanting to affect others: “‘We had to come. We couldn’t not come; it was impossible’” (Butler, 516). The organism makes Eli and the Clay’s Ark community need to infect others and, once the new individuals are infected, they are not allowed to leave. The kidnapped individuals are also not told until later that they would be exposed to an organism; after arriving at the community with the Maslin family, Eli tells them that the Clay’s Ark community had voted to not tell new individuals about the organism until later because it would just give them more incentive to escape. Informed consent might not be possible in the Clay’s Ark situation because there might be people who would react very violently once they hear that the community plans to infect them. Lupe, when speaking with Rane, references this, for she tells Rane that if she intends to fight against them “every chance (she gets),” then they will have to “hurt” her, indicating that the withholding of information might be for safety purposes.
In the first place, the lack of informed consent is scary because it connects a lot to what’s discussed in Washington’s Medical Apartheid. Washington makes clear the importance of knowledge and understanding in relation to consent. Washington in particular points out that children are unable to give informed consent because “they cannot understand the medical procedures or weigh the risks and benefits of participating in medical research” (290). The importance of information and understanding is further emphasized in how she gives us many instances where individuals were wrongfully misinformed/not informed of their medical procedures. One example would be Ebb Cade’s case; physician Joseph Howland injected Cade with “41 times the normal lifetime exposure” of plutonium without Cade’s informed consent for Cade was not given information about this incident at all (217).
However, what holds Dr. Chapman’s and Clay’s Ark’s initial lack of consent distinct from the horrible violations described in Washington’s text are the actions Dr. Chapman and the Clay’s Ark community take after the initial lack of informed consent. It strikes me that both researchers in deception studies and the Clay’s Ark community don’t really have a choice as to whether they can give informed consent or not. Deception studies would be made moot (because, as the name implies, there needs to be a level of deception for it to work) and letting individuals know before they are infected could potentially lead to violence. In this situation where informed consent is made difficult, both groups shifted their focus to allow consent in the healing process after and worked on establishing consent in the aftermath. Chapman’s team offered individuals an opportunity to opt out of the deception study and had their data erased. He additionally worked on reforming the deception study informative process by making sure that the participants clearly understood scientific jargon. Upon reflecting on the Clay’s Ark community, Rane acknowledges that Stephen Kaneshiro “could have hurt her but had not” (Butler, 596). Stephen himself, when asked by Rane whether she has a choice to go with him, tells Rane that she does have a choice (Butler, 530). This is shown even earlier on in the book. When questioned by Blake as to whether or not he would be given to Meda, Eli tells him that he cannot give Blake over to Meda because he doesn’t “own” Blake (Butler, 475). Perhaps then, through Clay’s Ark, Butler offers a potential option of dealing with the aftermath of a violation of informed consent (even if it might not be “enough”): giving space to heal and giving consent in the healing process.