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. Author manuscript; available in PMC: 2020 Jul 19.
Published in final edited form as: Public Health Genomics. 2019 Jul 19;21(5-6):228–237. doi: 10.1159/000501464

Table 4:

Alzheimer’s genetics Quality of Informed Consent (QUIC) Willingness items survey responses

Question Strongly
Agree
Agree Not sure Disagree Strongly
Disagree
Missing Item Score
N (%) N (%) N (%) N (%) N (%) N (%) Mean
(SD)
It is important to participate in genetic research. 269 (53.6) 194 (38.6) 27 (5.4) 5 (1.0) 2 (0.4) 5 (1.0) 95.88 (16.13)
I would like to be presented with an opportunity to participate in an experimental medication trial if I were at high risk for developing Alzheimer’s disease. 156 (31.1) 230 (45.8) 78 (15.5) 15 (3.0) 5 (1.0) 18 (3.6) 87.81 (25.86)
I would prefer not to be contacted for future research based on my genetic information. 7 (1.4) 28 (5.6) 61 (12.2) 248 (49.4) 138 (27.5) 20 (4.0) 86.41 (29.32)
Researchers should not knowingly withhold information about promising studies for which I may be eligible. 119 (23.7) 278 (55.4) 54 (10.8) 18 (3.6) 11 (2.2) 22 (4.4) 88.33 (27.40)
I would be willing to submit my genetic information to a registry to help match me to Alzheimer’s disease research studies based on my genetic information. 132 (26.3) 279 (55.6) 55 (11.0) 12 (2.4) 3 (0.6) 21 (4.2) 91.16 (22.82)

Note: Bolded responses reflect positive attitudes towards/a willingness to participate in AD genetic research.