Table 3.

Parents’ approaches to decision making for rapid genomic sequencing.

Deliberative decision making
“…the benefits outweighed the risks”. [Eleanor, mother of Edward, diagnosis]
“The only concerns that I really had were taking the blood from Ryan when he just didn’t have that much to give at the time, and the distress that it caused him”. [Rachel, mother of Ryan, no diagnosis]
“One of the biggest concerns we had was the privacy of the data”. [Eric, father of Edward, diagnosis]
“I wish before we’d had the genetic testing done, that I’d gone and taken out life insurance, income protection, etcetera, because now, when we go and do that…we have to disclose that we’ve had genetic testing done…it’s something that not only impacts my son’s life, but it now impacts my life and my husband’s life…” [Eleanor, mother of Edward, diagnosis]
“I was just very worried because something related to the genetics make me some worried, but afterwards when they given [sic] us the final report, it was good, so I was just pleased that it’s not something wrong with our genes”. [Frances, mother of Freddie, no diagnosis]
“…‘cause they kept mentioning genetics…we were concerned that it was coming from one of us…no one wants to be blamed for that”. [Sarah, mother of Samuel, diagnosis]
Little deliberative decision making
“…we were in that mindset that we just wanted to get it done…” [Bridget, mother of Bethany, diagnosis]
“…I was just happy to sign…we were just so invested in helping George and getting to the bottom of what was going on…that I think someone probably could have slipped a contract under our nose to sell the house and we would have just signed it”. [Graham, father of George, uncertain result]
“I can’t comprehend why someone would say no to a test”. [Sarah, mother of Samuel, diagnosis]
“…it was just straight to the point, for me. Enough of the fluff, if you want to do this test, get it done. We wasted a day, probably, with the counsellor…we could have just authorised the test, ‘Yeah, no worries, go for it’. I don’t think it required the actual sit-down conversation and things that…we had. It was just…we do a test for Isaac, whatever we need to do, let’s get it done”. [Ian, father of Isaac, no diagnosis]
“I’m happy to have any kind of test you want…” [Tyler, father of Thomas, diagnosis]
“[The genetics team] had told us it would be a worthwhile thing to do, fine, let’s do it. I just had complete trust, and that came from the time and care given by the team…” [Graham, father of George, uncertain result]