Table 4 Quotes illustrating negative impacts of OPBT

Q12

R23, known carrier, female, 30–40

“Maybe I will be shocked, for a moment become emotional from the fact that judgement day is coming. But on the other hand I imagine that I will be able to turn it around into: well, let it come then. Because I’ve known for years that I am a carrier and that the risk is that it is coming. So it is not a bolt from the blue, you know?”

Q13

R6, 50% risk, male, 50–60

“And that [you think]: oh, well, we have the test again this year, [that causes] tension. With some people, it gets in their system, perhaps not me, but I think with [my partner] it will, that she is occupied by it, unconsciously, like: fingers crossed, let’s hope that [the result is normal].”

Q14

R10, known carrier, female, 40–50

“Because then everything that you perhaps accidentally do differently than normally, then you are immediately being watched [by others]. So I expect that that will happen then. Yes, it is also a bit that then you suddenly become a patient, you know, because you suddenly have a disease.”

Q15

R10, known carrier, female, 40–50

“It says something, but it does not say a lot, because then the symptoms start. Well, then that could be in the coming, one, two or three years, but then you also don’t know how quick or slow it goes. (…) Because then you also want to know: well, what will I notice? And you don’t know that either.”