Table 5 Specific preferences in regards to biobanking-related aspects

Preferred level of informed consent when participating in a biobank and donating a biospecimen

Broad consent

138 (31.7)

Research-specific consent

166 (38.2)

One-time consent with conditional re-contact

131 (30.1)

Preferred procedure to protect donor identity when collecting biospecimens

Code biospecimens with possible re-identification

216 (49.7)

Irreversibly de-identify biospecimen at a later stage upon request

120 (27.6)

Irreversibly de-identify biospecimens at the time of collection

98 (22.5)

Neutral

1 (0.2)

When to contact participants if specific results to their biospecimens are generated

Re-contact under all circumstances

293 (67.4)

Re-contact me only in definite cases of having or increasing the possibility of having a disease

100 (23.0)

Re-contact me only in definite cases of having or increasing the possibility of having a treatable disease

37 (8.5)

Never re-contact me

5 (1.1)

In case of deciding to withdraw from a biobank

Disposal of biospecimens only

31 (7.1)

Deleting all data only

41 (9.4)

Disposal of both biospecimen and data

225 (51.7)

Removing donor identifiers, but keep biospecimens and data for future research

138 (31.7)