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Do Kids Have a Say?

Your child's role

Parents have to give legal consent for their child to join a research study, in almost all cases. So you've read the information and asked the questions of the study team. You think you might want to enroll your child. Now it's time to think about how your child feels about being in a study.
"...you might also want to involve your child in the decision as well. That's going to depend a lot on what sort of disease your child has, how sick your child is, how old your child is."
Dr. David Wendler, Clinical Bioethicist

  • At what age should you ask a child if they want to enroll?
  • What if your child feels differently than you about enrolling?
  • How do you reach an agreement about what is best?

There is a process called "assent." In most cases, this means that children are given basic facts about a research study and are asked to be part of the decision. Children can be asked to give assent from as young as six or seven. Sometimes they can be older or, depending on the study, assent may not be required.
"...well [I thought], if my parents say yes then I'll say yes. But my parents were like, 'Well, it really is your decision'..."
Bianca, child in kidney disease study

All kids are different.

Some kids may want to be part of the process, others may not. Some may be uncertain or fearful. Others may wonder about pain...or how it will affect school and friends. Some children may be too young to be involved while others can understand as an adult would.

Kids as young as 2 or 3 won't be involved in the decision process, but when children get to 14 or 15, data suggest they understand a lot about the process. That leaves a group of children in between that understand at different levels...some may understand very little, while others focus on what is going to happen to them. At any age, the important thing is that they are comfortable and their questions are answered.

What seems to be true for all kids, though, is that their input should be valued.
This graphic is a visual depiction of some reasons that kids say no, for instance, fear of the unknown, concern about pain or what other kids will say, or that they don't want to miss school or be different from their friends.
"It was my choice completely whether I wanted to do it or not. I had to- I read over exactly what the disease was. Actually I think I do that every now and then too, just to make sure I want to stay on it."
Sawyer, child in Fabry disease study

Sometimes a parent and child can't agree. But often disagreements can be worked out with the help of the study team. In fact, there are advocates and ethics experts involved in most studies who can help with just these situations.

It's about talking...you and your child. And remember that the study team is there to help too.
"...you know, they're smart kids. If they don't want to participate they can really deep-six the whole thing in terms of their level of cooperation. It also isn't respectful of them. I mean, they need to be able to have it explained to them, and see if it's something they really want to commit themselves to."
Dr. Renee Jenkins, Pediatrician, American Academy of Pediatrics President, 2007-2008
Terms You Should Know
Assent: The term used when a child agrees to be in a study.