Table 2 Quotes illustrating willingness to undergo biomarker testing

Q1

R9, known carrier, female, 40–50

“It seems enormously valuable to me if you [could] know in advance: you are going to become ill over the next few years.”

Q2

R6, 50% risk, male, 50–60

“[If I underwent genetic testing I would] know immediately, and then what can I do with it? So that is insufficient for me at this time. Or well, I just don’t want to know. But if I could do a [biomarker] test now and I would get it [FTD] in two years, then I would want to know that.”

Q3

R9, known carrier, female, 40–50

“[I would participate] because it teaches people something. And if it is not right for me, then it is useful for someone else in the future. Especially that is a beautiful motive to [participate in research] I think, because it probably will not help me anymore, but perhaps it will help the person in generations after me. So I think I would do it. Well, also for yourself of course, but the chances that it [works] for that, well…”

Q4

R3, 50% risk, female, 30–40

“I would rather first be monitored and only then have genetic testing, but mostly because I do not want that genetic test result immediately. (…) I would only want the genetic testing result at the moment that the blood [biomarker] test changes, that the idea is that it is starting.”

Q5

R5, known carrier, female, 40–50

“I would only want to know if I can do something to slow the disease process or delay it or, preferably, cure it, of course.”

Q6

R16, 50% risk, male, 20–30

“I would not be able to handle it, I think, no. [What makes it difficult is] that you know what is going to happen, because you know what the rest of your friends and family… You will not notice yourself (…) The rest will be broken by it, sort of, especially your loved ones.”