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Table 4 Quotations relating to potential consequences 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
Lifestyle modification
Q37 You could change your lifestyle, eat healthier, exercise, keep the brain active, those kind of stuff. (Participant 8) Early-onset AD
Q38 If I find out I’ve got a particular genetic trait then will I be able to change my lifestyle and reduce that risk. (Participant 9) BC
Q39 It gives you a chance to get yourself fit and reduce your risks like smoking, and they sometimes say pollution and all sorts of things. (Participant 3 RA
Q40 Perhaps presented in your own personal profile it might make you change your mind, it might take on a bit of extra significance. (Participant 20) BC
Q41 If they don’t have this gene they could think I’m completely fine, I’m not going to get it. (Participant 19) BC
Q42 I might stop doing all the good things like cycling and running and being healthy, I might stop doing all the preventative stuff because I thought the risk was remoter than I would have anticipated. (Participant 2) RA
Future planning
Q43 You can make allowance in terms of financial, putting money away for care and treatments that is you know that’s what you’re expecting later down the line. Make sure you’ve got a Power of Attorney. A good Will. (Participant 18) Early-onset AD
Q44 If you know there’s a likelihood you’re going to develop it you can start to put things in place for the future and you know address your home and make it safe and start to do procedures…make sort of memory boards and that sort of thing. (Participant 3) Early-onset AD
Q45 Expecting the worst you could put things in place so that you know if the worst were to happen that you know, things like your family were looked after and things like life insurance. (Participant 8) BC
Q46 If you’ve got children and you need to prepare to leave them something to look after themselves, so your lifestyle might change in that you’re cutting back on doing things. (Participant 9) BC
Q47 If you were going to buy a house and there’s a chance of you having rheumatoid arthritis, would you buy a house with stairs or get a bungalow. (Participant 10) RA
Q48 If you’re a builder and the pension age is probably 89 by the time we get there, you’ll be thinking ‘oh god I can’t be a builder for the next 25 years’ you’d have to look at alternate career options. (Participant 17) RA
Q49 I think it would like change your career path or your life. (Participant 11) RA
Responsibility to disclose risk information
Q50 I’m not sure I would rush to share it with my children. (Participant 2) RA
Q51 She should probably let her kids know. (Participant 22) Early-onset AD
Q52 As much as it is a personal choice, I feel like if that was me I’d feel a certain amount of responsibility to tell people I’m related to that I have a genetic predisposition. (Participant 11) BC
Q53 If she has daughters she should certainly talk about it to them I think, so that they can be aware and perhaps take the test if necessary. (Participant 6) BC
Risk of discrimination
Q54 I’d be very careful about letting it get out into the public sphere because there is a lot, even when you don’t have insurance companies, but still if a company knows that you’re sick or have a higher risk of being sick, they’re not going to hire you. (Participant 22) BC
Q55 I think possibly everyone in terms of jobs, work situations and things like that, how employers would be if that information was disclosed, you know employers would start questioning that person’s reliability… confidential disclosure would have to be carefully considered. (Participant 1) Early-onset AD
Q56 If genetic testing became part of everyday life then the insurance company would certainly put a clause in there ‘have you had any genetic testing done?’ and that could impact on whether they insure you or not or how much you have to pay for insurance. (Participant 1) Early-onset AD
Q57 We can say there is confidentiality it’s highly unlikely that information gets out, but that information is still there and it could get out, and that would impact your ability to work. (Participant 22) RA
Psychological impact
Q58 It’s always better to know either way because she’ll just spend her life worrying, but at least the test would give her an answer so to speak. (Participant 20) BC
Q59 It might have a higher impact for your mental health. (Participant 2) Early-onset AD
Q60 Tortured for a long time with whether she would or she wouldn’t get the diagnosis. (Participant 17) Early-onset AD
Q61 Mentally about living with what could be a ticking time bomb, there are some I think who would find it very very difficult to carry on life as normal, it would forever be with them that they were at this increased risk. (Participant 2) BC
Q62 It could also give her unnecessary worry. (Participant 22) BC
Support
Q63 I’d also look at support services around as well, because even though it isn’t a diagnosis, certain people might require additional support for you know, so as not to worry or you know drive themselves mad thinking about it constantly. (Participant 8) BC
Q64 If they need someone to talk to about it…so maybe just also maybe even it it’s just a one-off session to talk to maybe a professional. (Participant 23) BC
Self-learning
Q65 It gives you the chance doesn’t it, to go out and educate yourself, find out what drugs are out there and what the scenario is going to be in the future. (Participant 3) RA
Q66 It would make you more aware of educating yourself as to what to look for. (Participant 3) RA
Q67 If you know there’s a likelihood of it developing, even if it’s only 20%, you would then perhaps think ‘oh my joints are a bit sore, I haven’t noticed that before’, it would make you do a bit of research and you found out about it, and you would actually be more aware of your body, the changes in your body. (Participant 3) RA
Early diagnosis
Q68 An earlier diagnosis will mean it’s more treatable. (Participant 19) BC
Q69 It could make you more vigilant to do self-testing. (Participant 13) BC
Q70 Being able to have access to more frequent mammograms and stuff like that. (Participant 23) BC