Table 3 Themes and representative quotes illustrating participant perspectives.
Theme | Example quote from participant perspective | References |
---|---|---|
Trust in the Primary care provider | “And if she [GP] were to see something, I would number one: I would expect she would be smart enough to see it if it were there; and two: she would mention it. And I’d be certainly willing and interested to talk with her about it… I would be open of course, but if no one brings it up I just let it go. Why should I, you know?” (Wilde et al., [40]) | |
Primary care physician’s knowledge and consumer resources | “Of the 1019 survey respondents, 66% would like to receive information on the disease from a family physician, but 69% agreed that the specialist was the one they trusted more.” (Teixeira, et al. [36]) | |
Anxiety and emotional support | “It takes time, it takes time to accept [genetic test result]. That’s how it was for me. I didn’t accept. When I went for my visits with Dr A., I cried all the time.” [Mother] (Hernandez et al., 2019) | |
Primary care physician’s relationship with genetic professionals | “Most of it [seeing specialists] was questions, questions… he didn’t explain… how I am ever going to find out whether I have got this condition” [PP5 referred to specialist as was found to have a variant of unknown significance] (Silva et al., [38]) | |
Beliefs about genomic applications | “You get this test and it tells you everything about your risks and your genetic makeup. So I just think it could be interesting to know, you know, just again to help me keep healthy for the future” (Puryear et al., [35]) | |
Data Security | “The only reason I took part in this genetic test was because it was guaranteed to be confidential and not passed on to any other party.” (Middlemass et al., [44]) | |
Insurance costs and concerns | “What are the implications of this? If you know this and you got an increased risk and it goes into your medical history, life insurance companies take those medical histories into account when they are coming up with plans.” (Leventhal et al., [26]) |