Development of a Multimedia Electronic Consent Platform for Biobanking and Research Utilizing Opinions from Children,Teens,and Adults

Abstract

Objective:

Ethical research recruitment relies on effective informed consent. We sought feedback and acceptance from users regarding an interactive, multimedia, electronic consent (e-consent) platform for recruitment of research participants to the BC Children’s Hospital BioBank (BCCHB). We aimed to enhance user experience when considering research participation and documenting consent decisions through the modality of an e-consent.

Study Design:

A prototype e-consent was developed and end-user opinions regarding content, visuals, user satisfaction, and electronic consent/assent practices were obtained from children, teens, and adults via an online survey and focus groups. A finalized e-consent was submitted for research ethics board (REB) approval.

Results:

All age groups rated the description of information, images, and formatting in the e-consent as highly favorable. Teens and adults preferred online (38% and 42%) rather than paper-based (17% and 16%) consent, while children expressed no preference. Majority of children (100%), teens (92%), and adults (98%) agreed or strongly agreed that they understood all the information given during the online consent process. No significant differences were found in survey responses between age groups. Adult and teen focus groups suggested improvements in formatting and addition of features to further clarify terms like “ongoing donation” and “privacy measures.” All ages preferred the ability to complete the e-consent independently, with optional assistance from research staff. The e-consent received REB approval and was implemented for BCCHB recruitment.

Conclusion:

An e-consent was developed and its modality was successfully accepted by end-users from several age groups, including children and teens, for use in pediatric biobanking. This method may potentially improve the process of completing research consent, particularly with adolescents.

Keywords

bioethics informed consent REDCap electronic consent opinion biobanking pediatrics

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