Table 4 Expertise and Coordination Challenges: Exemplar Quotes

4.1.

State/federal coordination challenges

“The role the federal government plays is to provide the resources for doing the studies that are necessary to develop best practices or other things that might help states have a better understanding or to build their follow-up program, for example…. I think the federal government plays an important role, but I think that unless the whole system changes, it’s a state-driven public health program and they have the opportunity to take what’s out there and meld to what’s the best for rural state or urban state or a whole bunch of different things that might change how they apply some of these things.” (Panel 4, Participant 30)

4.2.

Expertise-related implementation challenges

“But even adding new positions is a tremendous challenge, trying to find a qualified person to do newborn screening when the current position descriptions are really based on 20 years ago. And so, I think it’s positions, it’s resources—it’s expertise. We’re talking about a whole new—potentially new—paradigms of testing. The newborn screening labs are not very limber in terms of putting new stuff out. They do a great job with what they do, but they’re not very limber in terms of adding new things very rapidly.” (Panel 5, Participant 36)

4.3.

Public education and awareness challenges

“We call newborn screening this huge public health success, yet so few people know about it. And now that more people do know about it, I mean, we do have those fears of the public that come in [privacy concerns, fears about misuse of dried blood spots]…” (Panel 1, Participant 2)