CARE Bioethics

The National Institutes of Health (NIH) introduced new data sharing requirements in 2023 for NIH-funded studies, and there is currently a lack of information from the craniofacial community regarding stakeholder preferences about sharing research data. There are unique considerations for the craniofacial community when it comes to data sharing, as participants include individuals with rare conditions and visible differences.

It is critical to develop guidelines that reflect participants’ lived experiences and values. Caregivers and individuals with craniofacial microsomia or others in the craniofacial community have not been engaged in these conversations in the past, and our study seeks to understand these perspectives. This study will explore participant and caregiver perspectives on research data sharing for craniofacial research and will produce recommendations for data sharing in patient-oriented craniofacial research.

Dr. Carrie Heike (CARE Study Primary Investigator) and Prof. Stephanie Kraft will be leading CARE Bioethics, exploring participant and caregiver perspectives on research data sharing for craniofacial research.