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Medical Research: Our Family’s Affair

Well, the “study folks” finally made contact with me. They had left several messages and I had intended to return their calls…sort of. I knew that participating in a research study was something our family would be asked to do. Perhaps I was intentionally not making myself very available. But I knew that eventually they would track me down, and yesterday they did.

The Request

“Mrs. Crow? This is Jeannie…” She went on to explain that because our family had two children with juvenile diabetes, we were eligible to participate in a study called the Type 1 Diabetes Genetics Consortium. The study would consist of a blood draw for all four of my sons, and they would check for genetic markers and antigens and other information in the samples. A comparison would be made with the blood of my sons who have the disease and the blood of my sons who don’t. Perhaps, she said, they could find differences in the two samples which could eventually help us understand the variances between those children who contract the disease and those who don’t. Do some children have natural barriers in their blood which protect them from juvenile diabetes? Are some children lacking certain important blood components which make them vulnerable? Obviously if there were differences, researchers could potentially isolate them and see whether there were ways to recreate those factors to help prevent other children from getting this dreadful disease.

Jeannie went on to ask if we would be willing to also participate in a second study, for family members of children with type 1 diabetes. This study would involve me, my boys’ father, and their two half-sisters. It would also involve a blood draw. She added that everyone who participates would be paid $25.00. Not a huge deal, but the kids might feel somewhat compensated for giving up some blood. I’d have to ask them about it. I told her I thought it was something we would be willing to do, and I would talk to the children.

The Topic At Dinner

As we sat around the dinner table, I mentioned the study to the children. They were understandably hesitant. When are kids ever thrilled about the idea of needles? Even my two sons with diabetes somehow distinguish their shots from “blood draws” which apparently “hurt more.” But I explained that it would help the cause for finding the cure for juvenile diabetes. It would also tell us if any of us who didn’t yet have the disease had the antigens which would make us vulnerable to the possibility of getting it in the future. I’m not sure how I feel about my children having that information. What kid wants to live with that dark cloud hanging over him… I don’t have it yet, but I have the potential to get it sometime in my life? I am thinking I may not share that information with the children. And then again, do I even want it myself? I don’t like the idea of living in fear. We have enough to grapple with.

The kids asked about their three-year-old sister. “How will she handle getting her blood drawn?”

“Probably not well,” I admitted. “I’m sure it won’t be super fun for her.” I didn’t like the idea of putting her through it, but it might give us information. And it would be a relief to know she didn’t have the vulnerable blood chemistry, if that turns out to be the case.

On the Bright Side

As we talked, I remembered to add, “Oh…they will pay $25.00 to everyone who participates.” That’s when everyone got quiet, and then loud. “Could I buy a video game?” “Hey, could we put the money together and buy something cool? That’s a hundred and fifty dollars!” And my two step-daughters, who cannot participate because they are not related to my sons by blood, whined, “You mean we’re not allowed to do it? That’s not fair.”

Jeannie emailed me the consent forms. I still haven’t looked at them. I have a tendency to digest these things slowly. Maybe tonight, when the kids are asleep.

I can’t help but marvel at what an unusual set of family circumstances we have: a blended “yours, mine, and ours” group with two diabetics, one son with autism, and two stepdaughters with ADHD. Yet these are gifted, wonderful, courageous kids. They take everything in stride, and they always want to do the right thing. I am the proudest, luckiest mom around.

Kristyn Crow is the author of this blog. Visit her website by clicking here. Some links on this blog may have been generated by outside sources are not necessarily endorsed by Kristyn Crow.

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Should Your Child Participate in a Study?

Why Do Some Kids Get Juvenile Diabetes? And Can We Prevent It?