Table 2.
Participant preferences when seeking permission for sharing genomic data and biological samples with researchers
| Identifiable genomic data N (%) | Anonymous genomic data N (%) | Identifiable biological samples N (%) | Anonymous biological samples N (%) | |
|---|---|---|---|---|
| Should Queensland Health ask your permission before allowing researchers to access the following from your medical record? | ||||
| Total number of participants who respondeda | 1487 (99.5) | 1484 (99.3) | 1484 (99.3) | 1476 (98.8) |
| Strongly agree | 858 (57.7) | 260 (17.5) | 820 (55.3) | 256 (17.3) |
| Agree | 423 (28.5) | 270 (18.2) | 432 (29.1) | 265 (18.0) |
| Undecided | 61 (4.1) | 170 (11.5) | 71 (4.8) | 168 (11.4) |
| Disagree | 101 (6.8) | 490 (33.0) | 107 (7.2) | 486 (32.9) |
| Strongly disagree | 44 (3.0) | 294 (19.8) | 54 (3.6) | 301 (20.4) |
| Overall agreement for asking permissionb | 1281 (86.2) | 530 (35.7) | 1252 (84.4) | 521 (35.3) |
| Overall disagreement for asking permissionc | 145 (9.8) | 784 (52.8) | 161 (10.9) | 787 (53.3) |
| How often should Queensland Health ask for permission to give researchers access to the following from your medical record? | ||||
| Total number of participants who respondeda | 1486 (99.5) | 1481 (99.1) | 1481 (99.1) | 1476 (98.8) |
| Every time | 960 (64.6) | 287 (19.4) | 956 (64.6) | 291 (19.7) |
| Sometimes | 59 (4.0) | 93 (6.3) | 54 (3.7) | 92 (6.2) |
| Only once | 391 (26.3) | 537 (36.3) | 386 (26.1) | 525 (35.6) |
| Never | 76 (5.1) | 564 (38.1) | 85 (5.7) | 568 (38.5) |
aPercentage for level of agreement is given as total number of participants who responded
bOverall agreement is calculated as the sum of ‘agree’ and ‘strongly agree’
cOverall agreement is calculated as the sum of ‘disagree’ and ‘strongly disagree’