Table 1 Consent strategies presented to participants
From: Parental perspectives on consent for participation in large-scale, non-biological data repositories
Consent strategy | Features |
|---|---|
Traditional, Project-Specific Consent | Participants are asked for consent for all new uses of their data, including sending it to a repository and every time a new researcher wants to access it. |
Broad, One-Time Consent (i.e. Blanket Consent) | Participants are asked for their consent for their data to go to the research data repository just once. If consent granted, all uses are managed by the processes of the repository. |
Broad, Periodic Consent | Participants are asked for their consent for the data to go to the repository for future uses but the repository checks back with them at intervals to confirm ongoing consent. |
Conditional Consent (i.e. Tiered Consent) | Once in the repository, participants are asked for consent for new uses based on the features of new studies. For example, they may say they only want studies about growth and nutrition, not any other topics. Or, they may only want studies done by students and no other researchers. The repository then uses this guidance to decide how to share that participant’s data. |
Opt-Out Consent | Participants are informed that their research data will be placed in the repository and they can do nothing if they are okay with that or they can answer within a given time period to say that they do not want their data to be included. |
Notification-Only, No Consent | Participants are notified that their research data has been sent to research data repository and is now available for secondary use. Participants have no opportunity to provide or withhold consent. |