| General info about the biobank and who is responsible for the IC procedure |
n |
186 |
20 |
11 |
| % |
85.7% |
9.2% |
5.1% |
| Contact details of the biobank |
n |
174 |
30 |
13 |
| % |
80.2% |
13.8% |
6.0% |
| The purpose and (future) objectives of the associated research |
n |
191 |
16 |
8 |
| % |
88.8% |
7.4% |
3.7% |
| Details about research conducted through the biobank (e.g. via an online tool) |
n |
72 |
124 |
16 |
| % |
34.0% |
58.5% |
7.5% |
| Possibility for the participant/donor to be re-contacted for additional data/samples |
n |
135 |
66 |
13 |
| % |
63.1% |
30.8% |
6.1% |
| Possibility of returning individual research results |
n |
129 |
68 |
14 |
| % |
61.1% |
32.2% |
6.6% |
| Linkage of data/samples with data from other sources (e.g. registries, national statistics) |
n |
115 |
78 |
20 |
| % |
54.0% |
36.6% |
9.4% |
| Sharing data/samples with other non-commercial research partners |
n |
165 |
33 |
18 |
| % |
76.4% |
15.3% |
8.3% |
| Sharing data/samples with commercial and/or health industry partners |
n |
119 |
77 |
20 |
| % |
55.1% |
35.6% |
9.3% |
| Sharing data/samples with parties in other EU countries |
n |
125 |
69 |
20 |
| % |
58.4% |
32.2% |
9.3% |
| Sharing data/samples with parties in non-EU countries |
n |
110 |
82 |
23 |
| % |
51.2% |
38.1% |
10.7% |
| Expected storage period for data/samples |
n |
119 |
81 |
13 |
| % |
55.9% |
38.0% |
6.1% |
| The right to withdraw IC at any time and what happens to data and samples afterwards |
n |
192 |
13 |
9 |
| % |
89.7% |
6.1% |
4.2% |
| Other rights of participants, e.g. right to access data or right to know how data is processed |
n |
118 |
75 |
20 |
| % |
55.4% |
35.2% |
9.4% |
| The right to lodge a complaint with a supervisory authority (e.g. an ethics commission), including contact info |
n |
73 |
110 |
30 |
| % |
34.3% |
51.6% |
14.1% |
