Table 1 Focus group topic guide.
From: Toward the diagnosis of rare childhood genetic diseases: what do parents value most?
Category | Focus group question |
|---|---|
Introductions | What are your first thoughts about genomic testing to help learn more about why your child is ill? |
Expectations and concerns | What are some benefits of genomic testing you would expect? |
What are some concerns you might have about genomic testing for your child? | |
Decision making and consent | What would be the most important thing to know before deciding whether or not to have your child undergo genomic testing? |
Who would you want to talk to or be involved in the decision to undergo genomic testing for your child? | |
If the information obtained through your child’s clinical diagnostic test were to be made available for research purposes, would you be willing to consent? Why or why not? | |
Return of results | What kind of information would you want to receive from your child’s genomic test? |
How would you want to learn about the results of your child’s genomic test? | |
What are your thoughts on sharing your child’s test results? |
