Deciding whether your child should participate in research involves choosing from a few different options. One option is to have your child participate in the research study. Alternatives to participating in a study can include:
* Receiving what is currently considered standard care
* Participating in other clinical trials
* Choosing care focused on improving comfort and quality of life
* Or receiving no medical treatment.
For each alternative, you can ask some of the same questions we reviewed earlier about research, such as:
* What are the benefits and risks of this choice?
* How likely is it that they will occur?
* And how will my child and I feel if the risks occur?
In the end, you'll need to answer the question: Why would I have my child in the research study instead of choosing one of the other alternatives?
You've been given a lot of information to think about and discuss with those around you. It's important to gather information from people like the principal investigator and research coordinator, family members and friends, your child's regular doctor, and resources such as this presentation and website. Depending on your child's age and ability, his or her opinions will also be important -- and your child's assent may be necessary.
In the end, your decision about medical research is likely to be influenced not only by the information you gather, but also by the unique characteristics of your child and your own family values. There is no absolute "right" or "wrong" answer about participating in research, only the answer that seems right for your child.