Table 2.
Participants’ views about the two most important benefits and risks of sharing genetic information for research.
| Benefits | Patients (n = 159) |
Informal Carers (n = 478) |
Healthcare Professionals (n = 63) |
p Value |
|---|---|---|---|---|
| Discovery of a cure for untreatable diseases | 134 (84.3) | 418 (87.4) | 40 (63.5) | <0.001 |
| Development of new drugs and treatments | 62 (39.0) | 231 (48.3) | 45 (71.4) | <0.001 |
| Development of personalised treatments, taking into account the characteristics of each patient | 68 (42.8) | 178 (37.2) | 21 (33.3) | 0.329 |
| Development of strategies to control disease dissemination | 51 (32.1) | 120 (25.1) | 19 (30.2) | 0.197 |
| Other: Help other people a | 0 (0) | 1 (0.2) | 0 (0) | NA |
| Risks |
Patients
(n = 157) |
Informal
Carers (n = 477) |
Healthcare
Professionals (n = 63) |
p Value |
| Lack of security and control over access to information | 114 (72.6) | 286 (60.0) | 31 (49.2) | 0.002 |
| Possibility of extracting information that exceeds the research objectives | 79 (50.3) | 289 (60.6) | 34 (54.0) | 0.064 |
| Performing genetic studies that can discriminate citizens | 54 (34.4) | 189 (39.6) | 43 (68.3) | <0.001 |
| Restrictions to citizens’ rights of privacy and autonomy | 64 (40.8) | 158 (33.1) | 17 (27.0) | 0.095 |
| Other: Misuse of information a | 0 (0) | 2 (0.4) | 0 (0) | NA |
| Other: Commercialisation of information a | 0 (0) | 1 (0.2) | 0 (0) | NA |
a Answers reported by the participants using the open-ended option. Notes: Participants were asked to select the two most important risks and benefits; Values are presented as count and proportions; Several answers possible, so percentage does not total 100%; Bold types represent statistical significance.