Table 4.
Participant preferences for organisation that they would choose to share their genomics data
| Total number of participants who responded (%) | Of the participants who responded | ||||
|---|---|---|---|---|---|
| Yes N (%) | Percentage difference (%)a | No N (%) | Unsure N (%) | ||
| What organisations would you share your anonymous genomic data with? | |||||
| Australian universities and research institutes | 1481 (99.1) | 1361 (91.9) | – | 49 (3.3) | 71 (4.8) |
| Australian not-for-profit research organisations | 1480 (99.1) | 1359 (91.8) | – | 50 (3.4) | 71 (4.8) |
| Australian government | 1453 (97.3) | 720 (49.6) | – | 498 (34.3) | 235 (16.2) |
| Overseas universities and research institutes | 1462 (97.9) | 797 (54.5) | – | 432 (29.6) | 233 (15.9) |
| Overseas not-for-profit research organisations | 1465 (98.1) | 842 (57.5) | – | 386 (26.4) | 237 (16.2) |
| Overseas governments | 1449 (97.0) | 247 (17.1) | – | 1016 (70.1) | 186 (12.8) |
| Commercial company | 1448 (96.9) | 247 (17.1) | – | 981 (67.8) | 220 (15.2) |
| Publically available | 1443 (96.6) | 187 (13.0) | – | 1094 (75.8) | 162 (11.2) |
| What organisations would you share your identifiable genomic data with? | |||||
| Australian not-for-profit research organisations | 1482 (99.2) | 1076 (72.6) | − 19.3 | 189 (12.8) | 217 (14.6) |
| Australian universities and research institutes | 1484 (99.3) | 1062 (71.6) | − 20.3 | 188 (12.7) | 234 (15.8) |
| Australian government | 1453 (97.3) | 268 (18.4) | − 31.1 | 766 (52.7) | 419 (28.8) |
| Overseas not-for-profit research organisations | 1458 (97.6) | 341 (23.4) | − 31.1 | 701 (48.1) | 416 (28.5) |
| Overseas universities and research institutes | 1462 (97.9) | 402 (27.5) | − 30.0 | 636 (43.5) | 424 (29.0) |
| Overseas governments | 1450 (97.1) | 36 (2.5) | − 14.6 | 1241 (85.6) | 173 (11.9) |
| Commercial company | 1449 (97.0) | 43 (3.0) | − 14.1 | 1209 (83.4) | 197 (13.6) |
| Publically available | 1450 (97.1) | 13 (0.9) | − 12.1 | 1324 (91.3) | 113 (7.8) |
| What types of research would you share your anonymous genomic data with? | |||||
| Research specific to a condition I have | 1480 (99.1) | 1407 (95.1) | – | 30 (2.0) | 43 (2.9) |
| Research into other diseases and conditions | 1481 (99.1) | 1341 (90.6) | – | 46 (3.1) | 94 (6.4) |
| General population health research | 1483 (99.3) | 1285 (86.7) | – | 95 (6.4) | 103 (7.0) |
| Ancestry research | 1467 (98.2) | 961 (65.5) | – | 296 (20.2) | 210 (14.3) |
| Unspecified future research | 1467 (98.2) | 717 (48.9) | – | 322 (22.0) | 428 (29.2) |
aDifference between participants that would share their anonymous and their identifiable genomic data