"This sounds like they’re talking to a 7-year-old," says my long, lanky son, who is nearly 15. He’s reading the screening assent form for the TrialNet “Pathway to Prevention Study” for type 1 diabetes. I’m trying to stay neutral.
"That’s so young kids can understand," I reply. Yet I’m not sure I truly understand our own emotions about this study, diabetes genetics, and how it all affects my family.
With my husband’s consent, I’ve asked our son to consider participating in the study to further diabetes research. As the assent form, written for kids ages 7 to 17, explains, “We hope this research study will help us to understand how people get diabetes. The study could also help us learn more about preventing diabetes.”
What I’m reluctant to share: I also want to know if my son is specifically more likely to develop type 1 diabetes. We’ve talked about the fact that he’s more at risk than the average kid because, after all, I have type 1 diabetes and I did contribute half his genes. He knows the signs and symptoms. He knows that I’ve tried to teach him about fat, protein, and carbs, just in case. He knows his younger cousin was diagnosed with diabetes this year.
|A Scientific Subject|
|Interested in learning more about TrialNet or other diabetes research and how you can participate? Visit diabetes.org/clinicaltrials.|
I know that participating in the study will help diabetes research. That’s the long view. The short view is, if my son is specifically more likely to develop diabetes, I want that knowledge.
But it’s his body and his medical future. Before an eligible child (one with a relative who has type 1 diagnosed before age 40) can participate in the study, he or she needs to read the assent form and have the opportunity to ask questions.
“Why do they need blood? Can’t they just use a hair?” he asks. I reply that they need a fresh sample of blood to spot autoantibodies, a sign of the body’s misguided immune system response that kills insulin-producing beta cells. I want to bring up the vials of blood I’ve given, the number of finger pricks through my years of diabetes. But that wouldn’t be neutral.
So I stay silent as he finishes reading the form. He reads out loud that we will be informed if he’s more likely to develop type 1 (only about 5 percent of those tested will have the autoantibodies) and that an annual blood check will be needed for follow-up over the years. He knows that his blood, without his name on the sample, will be kept for ongoing scientific inquiry.
He reaches for a pen from his backpack—is it ironic that the pen is blood red? He signs the form.
I would have accepted his decision to not participate. But the truth is, I’m not neutral. Thank you, Grant, and everyone else who participates in, conducts, and translates scientific studies and clinical trials. That dispassionate process we call science is truly full of love.
Kelly Rawlings, PWD* type 1
*Person with diabetes