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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
  1. Significant (p < 0.05) differences between public and ECs were highlighted.