Table 3 Choices in the informed consent. Absolute and relative frequency distribution of answers to selected items of the informed consent among the baseline CHRIS participants.
From: Ten years of dynamic consent in the CHRIS study: informed consent as a dynamic process
Decision | Option in the consent form | Yes N (%) | No N (%) |
|---|---|---|---|
Data sharing | Sharing codified data with research partners (with binding data transfer agreement) | 13,347 (99.69%) | 42 (0.31%) |
Sharing codified data with institutions that allow data access to the scientific research community (through databases) | 13,199 (98.58%) | 190 (1.42%) | |
Handling of data and samples in case of death or incapacity | In case of death or incapacity, samples and data will be available for research within the limit described by the consent | 11,574 (86.45%) | N/A |
In case of death or incapacity, samples and data will be anonymized | 1161 (8.67%) | N/A | |
In case of death or incapacity, samples and data will be destroyed | 653 (4.88%) | N/A | |
Re-contact for information and research | Re-contact for receiving information or re-consent to sub-studies/new studies | 13,343 (99.66%) | 46 (0.34%) |
