Table 2 Representative quotes displaying variable participant interpretations of genetic test results

Do not know

“To be honest, I don’t remember much of it. And I felt like I did not get the exact answer, if it was passed on to me or was it environmental. Until today, I’m not sure.” – Donna

Do not have LS

“… she had talked to me about, well the result is that there’s no mutations found in those specific genes. I think there were five or six genes which were involved in that. And it means that you haven’t got Lynch syndrome … So, the chances are that this was just one of those environmental or acquired tumours for unknown reasons.” – Daniel

“I was just told that I didn’t have Lynch syndrome, and that it wasn’t a genetic cancer.” – Jodie

Inconclusive, but unlikely LS

“… he said I’m in this small group, or this group of patients for whom it’s not a definitive link but there’s a chance, and they can’t rule it out, but it’s unlikely that it is a genetic issue.” – Matthew

Inconclusive for LS

“I think it was basically inconclusive. I don’t know. I still really don’t even really remember. But it wasn’t of a concern.” – Trevor

“Well, it just seemed she didn’t know whether I had it or I didn’t have it.” – Brian

“So the advice at that stage was that everything’s negative, but the suspicion’s still there.” – Peter

Inconclusive, but likely LS or treat as LS

“… the woman we spoke to sort of said, oh well, that’s nothing to worry about, and nothing you can do about that … and then I got another letter saying, oh, well actually because it was sort of indeterminate, or sort of an undetermined result, that they actually thought I would be better off being treated like I had a positive result.” – Veronica

“… from their experience, they told me that it most likely is [LS], but the technology hasn’t caught up to actually identify it for certainty.” – Colin