Table 7 Parent quotes pertaining to parent perspectives on the attributes of conditions that should be incorporated into genomic NBS.

From: “The ability to get ahead”: Australian parent perspectives on genomics in newborn screening and considerations for potential models of care

Quote 7.1

“I would prefer to have that information…now I can take things in my control. It might cause more trauma in my life, but at least I’m informed on what the decision is… And the sooner that I know [the] better for me and my kids” (Father…NBS)

Quote 7.2

“It allows you to plan ahead to have things in place that, if mobility should decrease or whatever, you’ve already got things in place ready to go for that.” (Father…NBS)

Quote 7.3

“It would depend on severity for me. …. I’d want to know very clearly what the chances were. So, give it to me on a scale of it’s likely to happen or not likely to happen, unlikely to happen and in what time period” (Mother…NBS)

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