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Table 5 Quotations relating to information and support needs of consumers 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
Q71 How thorough is the genetic testing, and the reliability of that…how much research is out there to prove that it’s effective in terms of for the individual? (Participant 4) BC
Q72 The question that would come to my mind is how reliable is the testing…how accurate is this test. (Participant 4) RA
Q73 I think I’d need to know about false positives and false negatives in that kind of percent [20% risk from genetic test]. (Participant 2) RA
Q74 Going back to the actual testing, I mean if it’s as broad the result, currently with the technology that we have, how useful is that to know anyways. (Participant 17) Early-onset AD
Risk management
Q75 The first thing she would want to know is what are her options in terms of treatment, or all the options available to her. (Participant 1) BC
Q76 They may want to know if there’s any preventative things they can do if they do find out they’re at risk (Participant 9) BC
Q77 It would be useful to have ways in which you could potentially reduce your risk…if they didn’t have it then they might not necessarily go out on their own to do their own research. (Participant 7) RA
Q78 Giving them the whole package when you are giving the results. (Participant 7) RA
Q79 I would want to speak to experts before having a test; is this really going to make any difference if I know, and are there treatments I can have, or things that I can do that are preventative. (Participant 9) RA
Communication of risk information
Q80 It needs to be worded carefully not to scaremonger people. (Participant 7) RA
Q81 If they’re given too much information, then they feel overwhelmed and not able to make a decision. The clinicians would have to find the balance on how much information they give the person having the test so that they can make an informed decision but not be sort of swayed by fear. (Participant 9) BC
Q82 Need to balance the personal yet collective way of explaining things carefully. (Participant 7) RA
Q83 I just think either some context to the numbers or just that it should be just explained exactly what these numbers mean rather than just spitting a number out, I don’t think it really explains the full breadth of the situation. (Participant 22) BC
Support services
Q84 Waiting for the results to come back and stuff like that is one of the worst times. (Participant 8) BC
Q85 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
Q86 There also needs to be a bit of care for the person who the test has been taken on…giving the person the result and just like ‘yeah you’re likelihood of getting breast cancer is 99%’ and they’ve got no-one to turn to, so I think it’s really important that the support network is there for the person. (Participant 7) BC