Table 3.

Frequency of comments and themes

Question/theme	Example	No. of respondents (out of 34 interviewees)
Do you use or encounter WGS as part of your clinical work?	Yes: “You know, I’ve got a few patients who were tested at [another hospital]. I had one patient just a couple weeks ago who was managed here by the new clinic.”	32
Is it currently helpful/does it change care?	Yes: “Whole-genome sequencing was really important in this child’s care, as well as in counseling the family for future children.”	14
Main themes raised:
Uncertainty in WGS testing	“I think that if the technology progresses and you have the right controls then someone with an expert background might be able to decipher all this information into a take-home message as a clinician. But I think this stuff is going to be a lot messier and there’s going to be a lot of nuance, and I’m concerned most clinicians are not going to have the aptitude to figure out what any of that stuff means.”	33
Moral distress/need for decision support	“I’m not sure how to deal with it. You know, there are some kids that we await, you know, kids who are stuck on a ventilator and we find out they really have surfactant protein deficiency that can be proven genetically, then we can stop, but they just wait. They still depend on us to know which test to order.”	32
Using WGS to ration care or decide futility	“If a child’s stuck on a ventilator and it’s just a matter of days, we’ll wait, but if that child is on a ventilator and can never come off and is going to die of a horrible respiratory disease within a few weeks, no parents want to put their child through that amount of suffering, so WGS can make a lot of hard decisions easier.”	27
Desire for ongoing education about WGS	“Things are changing so rapidly that when I think I may have a basic understanding of what I need to know, within a few months it’s changed. I don’t know how exactly I need to learn about this…maybe a quarterly update.”	27

WGS, whole-genome sequencing.