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Table 3 Quotations relating to decision-making factors influencing uptake of predictive testing

From: Public perceptions of predictive testing for rheumatoid arthritis compared to breast cancer and early-onset Alzheimer’s disease: a qualitative study

Code Quotation Disease
Perceived severity
Q1 It’s such a huge thing, it’s not like I’m not saying cancer isn’t huge but like this is a lot more, there’s no going back from it. (Participant 19) Early-onset AD
Q2 No one really wants to know a death sentence. (Participant 22) Early-onset AD
Q3 You think cancer ‘oh I’m going to die’, Alzheimer’s ‘I’m getting old I’m gonna die’ but rheumatoid arthritis I just think ‘oh that’s pain’. (Participant 13) Early-onset AD, BC, RA
Q4 The rheumatoid arthritis is not going to kill Miss Jones, so it’s not a life threatening disease. (Participant 1) RA
Q5 I think it’s slow just achy joints, cranky knees, your hands are a little bit stiff and a few months pass before you think to go to the doctors. (Participant 3) RA
Q6 It never even crossed my mind that I could go onto develop it, didn’t realise, lack of education there. (Participant 3) RA
Fear of being identified as at high risk
Q7 I don’t know if I’d want that hanging over me because it terrifies me, absolutely terrifies me. (Participant 8) Early-onset AD
Q8 There is that side of being scared. (Participant 19) Early-onset AD
Q9 A lot of people would shy away from it because of the fear. (Participant 8) BC
Q10 I think I would go less likely to have a test, if I knew it was a degenerative condition which had no treatment. (Participant 2) Early-onset AD
Q11 I’d be less inclined to take it because at least with the breast cancer as you say, it’s treatable, if you find out there’s some benefit to it. (Participant 18) Early-onset AD, BC
Q12 I would only take the test if I knew that the result, I could change it based on my lifestyle, I’d be much more likely to get it I think. (Participant 20) RA
Family history
Q13 If I know I’ve got the family history I’ve probably grown up expecting it. (Participant 2) Early-onset AD
Q14 Knowing I had a family history would be good enough for me, I wouldn’t want to know too much more after that. (Participant 23) Early-onset AD
Q15 If you kind of know you have a family history you might be already, not necessarily taking precautions but doing stuff like for that…I probably wouldn’t take the test because being myself I probably would have searched it up already. (Participant 23) RA
Q16 I would want to know and we’ve had quite a lot of experience with Alzheimer’s with friends and family. (Participant 3) Early-onset AD
Q17 If there has been a positive outcome in the family, then she would be very much inclined to do so, but if there has been negativity towards it, then she might consider not doing it. (Participant 1) BC
Q18 If they’ve had a family history as well, they’ve seen members of their family go through it and they want to prevent that happening. (Participant 9) BC
Family structure
Q19 What is her domestic situation? Is she on her own, is she as you pointed out looking after somebody as a carer? (Participant 5) Early-onset AD
Q20 I think it would depend on whether or not she has kids or if she’s planning to have kids. (Participant 15) Early-onset AD
Q21 I think most women, particularly if they’ve got children would want to have the test. (Participant 3) BC
Q22 If she’s got daughters she might want to find out in case her daughters might develop breast cancer in the future. (Participant 6) BC
Q23 I’d think ‘well maybe I can wait until that age’, I’m only this age now so I don’t need to know. (Participant 9) RA
Q24 A young person may not be thinking that far ahead anyway. (Participant 17) BC
Q25 It’s not until you hit perhaps 40 and you seem to become aware of various illnesses and the frailty of life…I don’t know whether a youngster would want to go down the route of finding out (Participant 3) Early-onset AD
Health attitudes
Q26 I think some people want to do everything they personally can to reduce and modify their risks, and other people say ‘well if it’s going to happen, it’s going to happen’. (Participant 2) RA
Q27 A lot of people wouldn’t do it because they don’t want to change who they are, they don’t want to change their lifestyle. (Participant 11) BC
Q28 The level of the person’s education and knowledge and experiences, that would have an impact on the decisions they make. (Participant 4) RA
Q29 Every individual is different and dependent on what her upbringing is and the choices she makes then it would have an impact. (Participant 4) BC
Q30 It’s about your mentality and the way you think about things (Participant 21) Early-onset AD
Q31 Has she got any other illnesses. (Participant 5) BC
Q32 I think in the interest of science and progression it would probably motivate them to go and have it done so that they can help with research or in any way contribute towards that kind of research for the future. (Participant 1) RA, Early-onset AD, BC
Q33 It could depend on what kind of job you do, so if it’s like an office type job or a physical one, and when the pension age is at the time. (Participant 17) RA
Existing screening services
Q34 We’re supposed to be checking for breast cancer anyway, so unless it would put her on a kind of special you know, some kind of special treatment that she would get. (Participant 22) BC
Q35 I’ve got to this age so I’m eligible for the screening now, so I don’t need to have further testing. (Participant 9) BC
Q36 I’m starting to think about Angelina Jolie now, so I don’t know, things also like media influence. (Participant 21) BC