24. Broad Consent for Secondary Use of Data: Students and the Consent Process

Participant consent for the secondary use of research data is a crucial element of the data lifecycle, and should be an important consideration in data curation and repository management practices. Canadian federal research ethics guidelines include numerous categories of information that should be provided to potential participants in order to establish that consent for unknown future uses of data, or broad consent, is informed. The volume of information conveyed during the consent process raises questions about participant engagement with and comprehension of the terms of consent and whether alternatives to written formats might be preferred by participants. To examine these questions, an anonymous survey was distributed to students at a Canadian undergraduate university designed to explore: how deeply students engage with consent information; whether a brief video describing procedures for, benefits, and risks of open data influences decisions to opt in or out of an open dataset; and whether those decisions are consistent with behaviours toward privacy and information security in other contexts. Preliminary results demonstrate low levels of engagement with the consent process; ineffectiveness of an explanatory video; largely altruistic motivations for participation in anonymous, open research; and attitudes toward personal data protection that are highly context-dependent. Further research in this area could support improvements to the open data consent process to add clarity and increase trust in research data management and sharing processes, and inform the development of institutional and repository policies around ethical data sharing.