| Sumario: | 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.
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