Work

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

Year: 2025

Type: article

Abstract: ObjectiveTo describe the perspectives of participants and caregivers of pediatric participants on data sharing in clinical craniofacial research.DesignQualitative interview study of research participants' attitudes about data sharing.SettingOne-to-one interviews via web conferencing.Patients, ParticipantsAdults (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.InterventionsSemistructured 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.ResultsWe 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.ConclusionsThese 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.

Source: The Cleft Palate-Craniofacial Journal

DOI: 10.1177/10556656251369658

Authors: Stephanie A. Kraft, Laura Stueckle, Elsa Ayala, Abril Beretta, Carrie L. Heike

Institutions: Geisinger Health System, Geisinger College of Health Sciences, Seattle Children's Research Institute, Treuman Katz Center for Pediatric Bioethics and Palliative Care, University of Washington

Language: English

Topic: Ethics in Clinical Research

Subfield: Public Health, Environmental and Occupational Health

Field: Medicine

Domain: Health Sciences

SDG: Good health and well-being

Open Access status: green

Funder: National Institute of Dental and Craniofacial Research