Table 5.
Participants levels of concern associated with sharing genomic data for health records with researchers
| Total number of participants who responded N (%) | Of the participants who responded | |||||
|---|---|---|---|---|---|---|
| Very concerned N (%) | Moderately concerned N (%) | Somewhat concerned N (%) | Slightly concerned N (%) | Not concerned N (%) | ||
| Insurance companies using my genomic data to discriminate against me | 1454 (97.3) | 1218 (83.8) | 89 (6.1) | 61 (4.2) | 39 (2.7) | 47 (3.2) |
| Marketing companies targeting me to sell me products | 1455 (97.4) | 1211 (83.2) | 112 (7.7) | 66 (4.5) | 32 (2.2) | 34 (2.3) |
| Employers using my genomic data to discriminate against me | 1455 (97.4) | 1174 (80.7) | 92 (6.3) | 65 (4.5) | 29 (2.0) | 95 (6.5) |
| My genomic data being made publicly available | 1457 (97.5) | 1026 (70.4) | 153 (10.5) | 118 (8.1) | 86 (5.9) | 74 (5.1) |
| Being labelled or stigmatised in some way | 1454 (97.3) | 932 (64.1) | 136 (9.4) | 114 (7.8) | 84 (5.8) | 188 (12.9) |
| Ethnic or racial discrimination | 1447 (96.9) | 912 (63.0) | 107 (7.4) | 97 (6.7) | 62 (4.3) | 269 (18.6) |
| Privacy of my personal details (e.g. name, date of birth, address) | 1457 (97.5) | 875 (60.0) | 234 (16.1) | 152 (10.4) | 109 (7.5) | 87 (6.0) |
| My genomic data being used for research without my permission | 1455 (97.4) | 684 (47.0) | 259 (17.8) | 174 (12.0) | 147 (10.1) | 191 (13.1) |
| Police using genomic databases with my details to investigate crimes | 1453 (97.3) | 554 (38.1) | 162 (11.2) | 167 (11.5) | 161 (11.1) | 409 (28.2) |
| Receiving information about my future health that has no treatment option | 1455 (97.4) | 521 (35.8) | 232 (16.0) | 224 (15.4) | 174 (12.0) | 304 (20.9) |
| My family finding out about my health results | 1453 (97.3) | 288 (19.8) | 172 (11.8) | 163 (11.2) | 175 (12.0) | 655 (45.1) |
| Upsetting my genetic relatives, because my genomic information is similar to theirs | 1454 (97.3) | 290 (19.9) | 166 (11.4) | 171 (11.8) | 222 (15.3) | 605 (41.6) |
| My genomic data being used by Queensland Health to improve services or diagnostic tests | 1452 (97.2) | 260 (17.9) | 243 (16.7) | 216 (14.9) | 193 (13.3) | 540 (37.2) |