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) |