Demographic and Clinical Correlates of Consent in a Pediatric Ophthalmology Biobank

The Kids Eye Biobank collects biospecimens, images, and clinical data from pediatric ophthalmology patients for future research use. A broad informed consent model is used; participants have opt-in choices, which include the creation of cell lines/organoids, use of whole genome sequencing (WGS) data, sharing resources with industry, and receiving future communications. This study aimed to characterize participant consent preferences and investigate associations between participant characteristics and their consent preferences.

Participant demographics, diagnosis, and consent preferences were abstracted from the Kids Eye Biobank's records. Variables were analyzed using descriptive statistics and chi-square test. Patient engagement methods were used throughout the study.

Between January 2020 and April 2025, 391 patients were approached and 342 (87%) enrolled. Of the enrolled participants, 265 (78%) had a substitute decision-maker, and 205 (60%) were diagnosed with a malignant neoplasm affecting the eye. Demographic data were available for 273 (80%) participants; 50% were boys/men, 48% identified as belonging to a visible racial minority, and 67% reported a religious affiliation. Participants with malignant neoplasms opted in more to the use of WGS data and to the sharing of WGS data and cell lines/organoids with industry (p < 0.05). Participants belonging to a visible racial minority opted in less to the generation of cell lines/organoids (p < 0.05) and to receiving communications about future research (p = 0.002) compared with White participants.

Informed consent preferences may be influenced by participant diagnosis and/or race. These findings may help the Kids Eye Biobank tailor its communication strategies and diversify its participant population.