I have struggled with this question since it was proposed to me. I have mulled it over and over through my head searching for an answer, and I haven’t found one. Through the readings and discussions within this course I have begun to understand that even with informed consent there are moments where we don’t get to consent at all, or moments where what we may have consented to is not taken into account. This question and examining of these events has also lead me to see informed consent in a new way, and the future of it as well.
This question was first given to me while reading Clay’s Ark, a book that starts with a kidnapping, an act that lacks consent. From there, both Blake and Rane are infected without their consent, and I fixated on how the organism would make Rane want to have children. Rane makes it clear she doesn’t want to have children, especially one that would look and act like Jacob. I fixated on how after becoming infected Rane lost the ability to choose things like having kids because the disease took over elements of her personality. Even Keira who did consent to being infected, can’t change her mind once she makes that choice, and she has no control over what parts of her the organism would change. How can we consent to something we have no idea will affect us? How do much consent do we have when we are going about our daily life? Even Rane loses consent at the hands of the car family who sexually abuse her. Events such as that, or a kidnapping, or forced infection, while wrong, do happen, and we only have so much control over them. Informed consent can not protect us in those moments.
My pondering became even more complex as we read Zone One. As Mark Spitz and his group clear out the bodies of those infected with the plague. Mark Spitz reflects on how they used to dispose of bodies by throwing them out of windows, saying: “It was disrespectful. It was unhygienic. Frankly, it was unpatriotic.” (pg.75). We have talked in class about the disrespectful use of one’s remains after death, and I couldn’t help but think about this act lacking consent. Because the skels can’t talk and are seen as a danger in this world, they aren’t given a say in what happens to them after they are killed. Before they were thrown out of windows, an act that destroyed their bodies and showed a careless nature to preserving the person they once were. Later, we see the bodies being burned, and their ashes fall through the city. The act of burning one’s body also destroys what is left of that person, and the scattering of one’s ashes shows a lack of preserving these people. No one who was thrown out of a building, or had their body burned consented. In the world of Zone One the wishes of the dead is an afterthought, and what they may have consented to is not a major concern.
So how do we preserve consent in times like this? How, if an event like this occurs, do we keep the consent of the dead from being violated? How much consent will we have in times like that? I don’t know and I still don’t have an answer. What I do have is an idea.
We uphold informed consent as the gold standard of consent. That in order to consent to anything we need to know the full array of risks and benefits. We also can’t be pressured into consenting, and we need to be able to back out at anytime. I’ve been over this in my research methods class and in any SONA system experiment I have participated in. But within our daily life we don’t always get informed consent. People come to class sick, we aren’t always made aware of this, and we may get sick as a result. People just sign the laptop after given the basic rundown of the next medical procedure they need. They trust their doctors, as they should, but most will not ask for an in-depth explanation or read the fine print. We just sign and say “I consent.” People also still ignore the consent of others, there are still areas were informed consent is not in place. So how much consent do we really have? I guess the only way to find out is to keep pushing for informed consent. For the evolution of informed consent as we find it’s shortcomings and as times change. The only way to work towards more consent is to keep improving upon what we have now. We compare the lack of consent in the past to the informed consent we have now, marveling at how far we have come, being able to see the change clearly. As we move forward in trying to expand informed consent, hopefully we will be able to see the change clearly as well. Hopefully, it will continue to protect more people, and show us the consent we have, and are still lacking.