Participant Perspectives on Data Sharing in Clinical Craniofacial Research: Qualitative Interviews With Participants With Craniofacial Microsomia and Their Caregivers

Abstract

Objective

To describe the perspectives of participants and caregivers of pediatric participants on data sharing in clinical craniofacial research.

Design

Qualitative interview study of research participants’ attitudes about data sharing.

Setting

One-to-one interviews via web conferencing.

Patients, Participants

Adults (n = 7) and adolescents (n = 8) with craniofacial microsomia and caregivers (n = 20) of children with craniofacial microsomia who previously participated in clinical craniofacial research.

Interventions

Semistructured interview guide addressing 4 main topics: (1) expectations about data collection and sharing; (2) preferences and limitations for data sharing; (3) consent/assent language; and (4) gaps and future needs.

Main Outcome Measure(s)

We iteratively developed a qualitative codebook based on inductive interview transcript review and conducted a thematic analysis of coded data.

Results

We identified 5 themes within participants’ descriptions of their attitudes about data sharing: (1) participants hope that research participation and data sharing will advance science for the benefit of the craniofacial community; (2) sharing images is broadly recognized as important for craniofacial research but raises discomfort for some; (3) participants generally view broad data sharing and use positively but raise concerns focused on harm to the craniofacial community; (4) trustworthy researchers and data protections provide reassurance for sharing data; and (5) decisions about pediatric data sharing are complex in the context of developing autonomy.

Conclusions

These findings illustrate ethical complexities for data sharing in clinical craniofacial research related to balancing community-oriented benefits and risks, providing control over sharing images, ensuring researcher trustworthiness, and respecting a child's future autonomy interests.