Development and validation of a stakeholder-driven, self-contained electronic informed consent platform for trio-based genomic research studies.

ABSTRACT: Increasingly long and complex informed consents have yielded studies demonstrating comparatively low participant comprehension and satisfaction with traditional face-to-face approaches. In parallel, interest in electronic consents for clinical and research genomics has steadily increased, yet limited data are available for trio-based genomic discovery studies. We describe the design, development, implementation, and validation of an electronic iConsent application for trio-based genomic research deployed to support genomic studies of cerebral palsy. iConsent development incorporated stakeholder perspectives including researchers, patient advocates, institutional review board members, and genomic data-sharing considerations. The iConsent platform integrated principles derived

SUBMITTER: Norton BY 

PROVIDER: S-EPMC11261908 | biostudies-literature | 2024 May

REPOSITORIES: biostudies-literature