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Ethical Considerations for Clinical Data Sharing in Craniofacial Research: Recommendations From a Multidisciplinary
Stephanie A Kraft1, Laura Stueckle2, Kathleen R Bogart3
1Department of Bioethics and Decision Sciences, Geisinger College of Health Sciences, Danville, PA, USA.
Summary
This study proposes 16 recommendations for ethical, participant-centered clinical data sharing in craniofacial research. These guidelines prioritize patient experiences and aim to improve data governance and research outcomes.
Area of Science:
- Medical Ethics
- Bioinformatics
- Craniofacial Research
Background:
- Clinical data sharing is crucial for advancing craniofacial research.
- Ethical considerations and participant-centered approaches are paramount in data sharing.
- Prior research indicates varying participant attitudes towards data sharing.
Purpose of the Study:
- To develop recommendations for ethical, participant-centered clinical data sharing in craniofacial research.
- To provide guidance for researchers, data repositories, and the craniofacial research community.
- To enhance trust and transparency in data sharing practices.
Main Methods:
- Deliberative multidisciplinary expert working group meetings.
- Review of empirical data on participant attitudes towards data sharing.
- Iterative refinement of recommendations based on collective expertise and data.
Main Results:
- Developed 16 recommendations across 5 domains: communication, data collection/protection, governance, researcher education, and research gaps.
- Emphasized prioritizing lived experiences of individuals with craniofacial conditions.
- Addressed challenges in privacy for facial images and promoted trustworthy data sharing practices.
Conclusions:
- The recommendations offer guidance for advancing participant-centered clinical data sharing in craniofacial research.
- Ethical data sharing that respects participant values can accelerate scientific discovery.
- Improved data sharing practices have the potential to enhance outcomes for individuals with craniofacial conditions.
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