Table 3 Key information for informed consent: public and ECs opinion ordered from the more to the less important in the public’s view
From: Public’s attitudes on participation in a biobank for research: an Italian survey
Public | ECs | Fisher Exact test | |
|---|---|---|---|
N = 123 | N =48 | P-value | |
Type of biological materials taken for a biobank creation | 111 (90%) | 44 (92%) | 1.000 |
Purpose for which biological materials will be used | 110 (89%) | 48 (100%) | 0.021 |
Communication of research results | 104 (85%) | 21 (44%) | 0.000 |
Prohibition of the commercialisation of samples and related data | 98 (80%) | 24 (50%) | 0.000 |
Right to withdraw consent to the use of samples | 98 (80%) | 47 (98%) | 0.002 |
Right to withdraw consent to the use of data | 97 (79%) | 42 (89%) | 0.275 |
Authorisation to be recontacted | 86 (70%) | 30 (63%) | 0.367 |
Rules to protect subjects’ privacy | 83 (67%) | 46 (96%) | 0.000 |
Independent ethics committee review | 65 (53%) | 18 (38%) | 0.089 |
Transfer of samples and related data to other research institutes | 65 (53%) | 31 (65%) | 0.175 |
Authorisation to contact family members | 62 (50%) | 11 (23%) | 0.001 |
Access to samples and data from external researchers | 59 (48%) | 26 (54%) | 0.499 |
Destiny of samples and data in case of advanced research conclusion | 58 (47%) | 25 (52%) | 0.612 |
Solidarity character of the participation | 53 (43%) | 36 (75%) | 0.000 |
Information on Intellectual Property Rights and patents | 53 (43%) | 20 (42%) | 1.000 |
Location of biological materials collection | 48 (39%) | 37 (77%) | 0.000 |
Destiny of samples and data after donor’s death | 41 (33%) | 17 (35%) | 0.858 |
Information on the property of samples | 40 (33%) | 25 (52%) | 0.023 |
Duration of the storage | 35 (28%) | 32 (67%) | 0.000 |
Benefit-sharing | 0 (0%) | 3 (6%) | 0.021 |