Table II.

Questions in the Semi-Structured Interview Guide

In general, what are your thoughts and opinions about NBS? How much did you know about NBS before this group? Have you heard about this disease [SMA] before? What are some of your opinions about research with children? What kinds of risk do you think this pilot study entails for families and their newborns? What kinds of benefits do you this pilot study entails for families and their newborns? What information should new parents receive about the pilot study and their option to refuse? Departments of health are concerned that people may opt out of NBS because of this research. What are your thoughts about this risk? What are your thoughts about the option to not participate for this study? (opt-out) What are some ways that you feel would be acceptable for parents to notify the pilot study about the option to refuse? (i.e. call in, email). If time and resources were not an issue, would you prefer (a) signed informed consent or (b) option to not [opt-out] participate for this project? Explain what you think is more important: to conduct this research or to have informed consent? Overall, do you think it is acceptable to do this kind of pilot study using the “option to refuse” approach? Why?