Skip to main content
. Author manuscript; available in PMC: 2017 Oct 1.
Published in final edited form as: J Genet Couns. 2016 Mar 4;25(5):1116–1126. doi: 10.1007/s10897-016-9943-z

Table 5.

Illustrative quotes relating to moderators of participant concern about impact of findings on fetus

Themes Illustrative quote
Type of involvement “There's typically heart failure somewhere along the line, whether that's earlier or later.”
“So you know, we don't care if the kid looks a little odd or needs a couple of plastic surgeries. If there's one thing—residual thing—that's a source of anxiety is the cancer risk.”
Strength of evidence “I wasn't too worried because they said that they don't know any clinical significance to it yet. It didn't necessarily mean anything bad. Not knowing anything was better than bad news.”
“To be told ‘we don't even have any statistics at all’ and that ‘the people who have this disorder—some have a heart problem, some don't; some are tiny, some are big; some of them are really smart, some of them can't speak at all’”
Inheritance “The worst are obviously the ones that are de novo or just happen...versus being hereditary, because if it just happens, you can't prove what the outcome is, where if I'm a carrier you can see if I'm a functioning human being.”
“I feel like I'm pretty normal. I'm hoping that whatever that it is just like some kind of a ‘passed down’ thing from my family or something that isn't gonna affect him, like it didn't affect me.”
Manageability “It's not something that's gonna affect the child's cognition or life span or health ultimately. It seems that it is something that is very easily treated, it's just the treatment is pretty expensive.”
“It's really a big gamble and there's no answer as to how each child is gonna react from the surgeries... the life expectancy normally isn't very high.”
Provider message “The geneticist said ‘send me pictures when the baby's born’—that was her way of saying it's good to go.”
“[The doctors said] ‘look, you're healthy, you're human, this happens all the time. You're a functioning adult; a lot of genes—just junk genes—they just take up space.’”
“He said ‘you don't want to do this. This is just going to be tragedy for you and your husband and the baby.’ I just trusted him so much and they were just so clear, that the problems that were on their way if we chose not to terminate.”