Sunday, June 1, 2014

Informed Consent

Well, if you couldn't tell by my blog title today, I am deep in the bowels of thesis data collection period.  Which is oh, so exciting that the day is finally here where this thing that I've been working on for 2 years is finally to the place where I can collect data on it. But it's also oh, so exhausting and tedious, and takes so much organization and work and requires me to stay on top of everything and that's really hard for someone with as much brain fog as I have.

But, I digress. I've been thinking through this whole process this past week of getting people signed up for the study they have to sign an "informed consent" and I have to have the original, signed copy in my hand before they can do any part of the actual study or record any data. This is to ensure that my participants know *EXACTLY* what is expected of them (the procedures) or what might happen to them (the possible risks or the possible benefits) the research costs (I'm not paying them a penny or for their trip to the doctor if they end up there) and things like this.

So all week I have been reading this same 3.5 page document to people over and over again to make sure they are "informed" of what may happen to them.

Interestingly enough, I also participated in someone else's Master's Thesis study this week from Emerson college in Boston who is doing their study on the transition from pediatric hospitals to being a young adult with a chronic illness and hospitals and things like that. Before I participated in his study, guess what, I had to sign an "informed consent" form. He had to know that I knew exactly what was going to happen during the interview and that I agreed to be recorded and agreed for him to use my picture. But much of the beginning of our conversation was going over the "informed consent".

Then I started thinking that every time I have a procedure done at the hospital, I have to sign an "informed consent" about whatever procedure I am about to have. Whether it is having my J tube replaced, my port placement checked, to getting a blood transfusion, to a CT scan or MRI. They also go over the procedure and the risks and have you sign that you understand everything that is happening to you before the procedure happens.

So all of the research and medical world is built on top of this idea of "informed consent" most likely so that they have their boo-tay's covered so when someone comes back years later and says you did this to me and it wasn't the right thing to do, you can whip out that informed consent and be like well, you agreed to it, you signed this form right here.

But here's my question. If there is so much basis on "informed consent" in the medical world and research world (and probably more worlds that I don't know much about). Where is the informed consent form we signed when we got these stupid diseases?

Like seriously, God didn't like come down from the sky and be like "Hey, Meggers, today I'm going to trigger mitochondrial disease complex I, III, and IV defects in you. This is what happens to your body when you have that and these are the possible risks and there really are no benefits, here's your informed consent form would you sign here before I give you this disease so you can't come back and get mad at me later, because you knew it was coming."

It really doesn't work like that. The rest of the world is built on informed consents, but not when it comes to what we end up with in life. And I'm not just talking diseases, I'm talking hair color, skin color, height, weight, personality, everything about you yourself is picked out by God. And you don't get a say. There is no informed consent for life.

And sometimes realizing that really stinks. When you're up to your eyeballs in informed consents for your thesis and have them right at your finger tip. Sometimes you just start to wonder, where was my "informed consent" for this life. I didn't sign a permission slip for this. This isn't what I wanted, nobody told me this is how it was gonna be. This isn't fair. But sometimes, we just have to realize that even if our lives aren't exactly what we would sign for on an informed consent, there still beautiful in God's eyes. And He made us just the way He wants us. So I guess that's all the "informed consent" we really need. Because God kind of is the biggest signer of consent forms out there. He signs all of our informed consents and makes them up just as He sees fit. And we can't complain about that.

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