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Key Implications of Data Sharing in Pediatric Genomics.
Vasiliki Rahimzadeh1, Christoph Schickhardt2, Bartha M Knoppers1
1Centre of Genomics and Policy, McGill University, Montreal, Quebec, Canada.
JAMA Pediatrics
|March 20, 2018
Summary
Sharing children's genomic data is crucial for accurate interpretation. The Key Implications for Data Sharing (KIDS) framework addresses ethical and legal challenges to facilitate this vital data sharing.
Area of Science:
- Genomics
- Bioethics
- Pediatric Health
Background:
- Accurate interpretation of pediatric whole-genome and whole-exome sequences requires robust comparison with variant reference databases.
- The effectiveness of these comparisons depends on the routine sharing of pediatric genomic and associated clinical data.
- Current ethical-legal policies inadequately address the routine sharing of children's genomic data.
Purpose of the Study:
- To detail the ethical, legal, and social implications of sharing genomic and clinical data involving children.
- To develop a framework addressing the complexities of pediatric genomic data sharing.
- To provide actionable points for consideration in establishing routine data sharing practices.
Main Methods:
- Convened an interdisciplinary Paediatric Task Team within the Global Alliance for Genomics and Health.
- Presented initial points for consideration at a Paediatric Task Team meeting.
- Developed the Key Implications for Data Sharing (KIDS) framework based on group feedback and literature appraisal.
Main Results:
- Identified key ethical and legal considerations for sharing children's genomic data.
- Developed the KIDS framework, a structured set of points to consider for pediatric genomics data sharing.
- Categorized the framework into four primary themes: children's involvement, parental consent, benefit-risk balance, and data protection/release.
Conclusions:
- Routine sharing of pediatric genomic and clinical data is essential for accurate interpretation.
- The KIDS framework provides a comprehensive approach to navigate the ethical and legal landscape of pediatric data sharing.
- Addressing children's involvement, consent, risks, benefits, and data protection is critical for advancing pediatric genomics research and clinical practice.
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