Parental perspectives on consent for participation in large-scale, non-biological data repositories

Table 3 Distribution of preferences amongst the consent models

Consent model	N (%)	Including first choice if more than 1 choice (N)	Including first and second choice (N)
Project-Specific	1	1	1
Broad, One-time	4	7	12
Broad, Periodic	1	1	3
Tiered	4	7	7
Opt-Out	0	3	4
Mix Tiered + Periodic^a	4	0	0
More than one Choice^b	9	n/a	n/a

^aParticipants countered that they preferred a mix of two consent models, the tiered and broad, periodic models, so that participants would be approached every 2 years by the repository and at that time they would be given choices to limit the types of research and researchers who could access their data
^bParticipants offered their first and second choices for the consent model to be used; they did not indicate a single preference. In the case of the focus groups that did not reach consensus (all but 1), this option details the different preferences amongst the group

ISSN: 2195-7819