Table 1.

Questions Addressed in the Focus Groups

Knowledge and awareness about NBS

Could any of you please explain any experiences you have had with newborn screening?

As parents (or pediatricians or community members), what was your level of awareness about this program? (If not, how does that make you feel? If yes, how do feel about this process?)

Do you have any concerns about this program?

Anonymous issues

Would you care if these samples were being used for other research purposes if they were anonymous?

Storage

Knowing the current uses and potential benefits for these newborn blood spot samples, what are some of your opinions, comments, and suggestions for storage of them?

How long do you believe they should be stored?

Research of residual samples

What would be some acceptable and unacceptable research purposes for blood samples?

What do you think the process should be for using the residual samples for research purpose?

Community

How would you communicate this issue to your community? How would you actually deliver the information?

Note: NBS = newborn screening.