Table 2:
Alzheimer’s Genetics Quality of Informed Consent (QUIC) Comprehension Items in Ascending Order of Comprehension (Higher Scores Reflect Greater Comprehension)*
| Question | Strongly Agree |
Agree | Not sure | Disagree | Strongly Disagree |
Missing | QUIC Item Score Mean (SD) |
|---|---|---|---|---|---|---|---|
| Genetic studies will inform me about my risk for Alzheimer’s disease | 100 (19.9) | 159 (31.7) | 187 (37.3) | 41 (8.2) | 10 (2.0) | 5 (1.0) | 29.07 (33.52) |
| I will be contacted if during the research testing, my genes show any disease risk factors. | 58 (11.6) | 205 (40.8) | 80 (15.9) | 108 (21.5) | 34 (6.8) | 17 (3.4) | 37.53 (44.00) |
| The main goal of genetic research is to help me directly | 59 (11.8) | 99 (19.7) | 122 (24.3) | 164 (32.7) | 48 (9.6) | 10 (2.0) | 55.49 (43.06) |
| If I withdraw from the study, all of my genetic information and samples containing my genetic information will be destroyed | 32 (6.4) | 101 (20.1) | 84 (16.7) | 171 (34.1) | 102 (20.3) | 12 (2.4) | 64.29 (43.26) |
| No one will ever be able to find out who I am, based on my genetic information | 39 (7.8) | 82 (16.3) | 101 (20.1) | 184 (36.7) | 80 (15.9) | 16 (3.2) | 64.71 (42.04) |
| There is always a way to get my results from research studies if I want them | 18 (3.6) | 57 (11.4) | 185 (36.9) | 153 (30.5) | 68 (13.5) | 21 (4.2) | 65.18 (36.21) |
| If my sample is identified there is a federal law (GINA) that protects me from discrimination | 79 (15.7) | 223 (44.4) | 108 (21.5) | 56 (11.2) | 22 (4.4) | 14 (2.8) | 72.95 (37.21) |
| Others not directly connected to the study will have access to my genetic information | 62 (12.4) | 246 (49.0) | 100 (19.9) | 56 (11.2) | 25 (5.0) | 13 (2.6) | 73.21 (38.12) |
| There is a possibility that my genetic sample could be identified | 51 (10.2) | 265 (52.8) | 103 (20.5) | 45 (9.0) | 25 (5.0) | 13 (2.6) | 75.15 (36.65) |
| The researchers taking my DNA sample will be the only ones to use my genetic information | 26 (5.2) | 41 (8.2) | 107 (21.3) | 201 (40.0) | 113 (22.5) | 14 (2.8) | 75.31 (36.25) |
| I can decide to not be told any results of my genetic testing | 57 (11.4) | 256 (51.0) | 100 (19.9) | 43 (8.6) | 15 (3.0) | 31 (6.2) | 77.07 (35.20) |
| The GINA law may not completely protect my privacy and confidentiality | 79 (15.7) | 254 (50.6) | 118 (23.5) | 21 (4.2) | 18 (3.6) | 12 (2.4) | 80.00 (31.62) |
| Research that examines all of my genetic information involves the greatest risk that the information could be linked back to me or my family | 85 (16.9) | 221 (44.0) | 88 (17.5) | 24 (4.8) | 1 (0.2) | 83 (16.5) | 83.53 (29.20) |
| I will be contacted if during the research testing, the results show I have a high risk factor for a disease that currently has available treatment | 113 (22.5) | 279 (55.6) | 60 (12.0) | 23 (4.6) | 9 (1.8) | 18 (3.6) | 87.19 (28.44) |
| If I withdraw from the study, some of my genetic information already shared will continue to be used | 142 (28.3) | 298 (59.4) | 38 (7.6) | 12 (2.4) | 1 (0.2) | 11 (2.2) | 93.48 (20.41) |
| Genetic research may entail varying levels of genetic information being collected depending on the study | 118 (23.5) | 324 (64.5) | 36 (7.2) | 2 (0.4) | 6 (1.2) | 16 (3.2) | 94.65 (17.94) |
| Genetic studies will help researchers’ find genes associated with higher and/or lower risk for Alzheimer’s disease | 252 (50.2) | 211 (42.0) | 31 (6.2) | 4 (0.8) | 1 (0.2) | 3 (0.6) | 95.90 (15.45) |
| My genetic information could be used for multiple research studies. | 174 (34.7) | 285 (56.8) | 24 (4.8) | 4 (0.8) | 4 (0.8) | 11 (2.2) | 95.93 (16.40) |
| The main goal of genetic research is to help others in the future | 330 (65.7) | 152 (30.3) | 8 (1.6) | 5 (1.0) | 2 (0.4) | 5 (1.0) | 97.79 (13.29) |
*
Note, in some AD genetic studies the correct answer for these questions could differ based on study design. The answers identified as correct above were the accurate answers based on the information in the summary paragraphs provided to participants. Bolded cells refer to correct responses.