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Table 4 Participant preferences for organisation that they would choose to share their genomics data

From: Sharing genomic data from clinical testing with researchers: public survey of expectations of clinical genomic data management in Queensland, Australia

 

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)

  1. aDifference between participants that would share their anonymous and their identifiable genomic data