Newborn screening for genetic conditions is conducted in all 50 states, but parents' opinions of such screening are largely unknown. As newborn screening has expanded from a few relatively common conditions requiring early treatment to a broader spectrum of conditions with uncertain prognosis, it is important to understand parents’ views. Stated preference surveys provide quantifiable data on parent preferences about features of newborn screening tests, the economic value of testing, and the effect of a test’s features on its probable uptake and value.
We conducted formative research and developed a stated preference survey on parents' preferences regarding voluntary newborn screening. We reviewed the literature on parents’ attitudes toward newborn screening and factors related to those attitudes and developed a list of condition and test attributes. We narrowed the list by expert review and conducted focus groups with parents of infants to determine if they understood the attributes and to see which attributes parents viewed as relevant.
We found that some parents struggled with the probability-based attributes. The most relevant attributes were developmental disability, physical disability, incidence, recurrence, lifespan, sensitivity, and cost. The survey developed from this study could provide data for economic evaluation, test prioritization, and educational material development.