CARE Bioethics

Inspired by new federal data sharing requirements, this study explored how the craniofacial community feels about sharing clinical research data. As craniofacial conditions are often rare and visible, the researchers sought to understand the specific privacy and ethical concerns of patients and their families.

Led by Dr. Carrie Heike and Prof. Stephanie Kraft, the team interviewed individuals with CFM and caregivers about research and data sharing. Interview themes were analyzed and brought to the CARE Ethics of Data Sharing Committee for deliberation. This committee included individuals with expertise in craniofacial research, bioethics, and patient/caregiver advocacy, as well as lived experience of craniofacial conditions. Synthesizing the data and ethical norms, the committee created formal recommendations and guidelines for ethical data sharing in future patient-oriented craniofacial research.

Publications from this work include:

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

  • Full article: https://pmc.ncbi.nlm.nih.gov/articles/PMC12455614/

• Ethical Considerations for Clinical Data Sharing in Craniofacial Research: Recommendations From a Multidisciplinary Working Group.

  • Full article: https://pmc.ncbi.nlm.nih.gov/articles/PMC12720393/