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.
- 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.
All Kids are Different
Some kids may want to be part of the process, while 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.
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.