Table 3 IPCHiP’s approach to addressing challenges for data sharing
Data-sharing challenges | IPCHiP approaches to solving these challenges |
|---|---|
Data-sharing approach | Utilize a federated approach to bring the analysis software to the data (‘data visiting’) rather than sharing data across international borders. Acceptance as a GA4GH Driver Project to develop and advocate for standards and processes around international genomic data sharing.128 |
Data discovery | Develop a central platform for researchers to query de-identified data across sites. If deeper information is required, researchers will apply for access. |
Data access | Utilize GA4GH standards such as Data Use Ontology (DUO) that will facilitate and streamline data access processes by standardizing researcher identity and data use.91 |
Data interoperability | Develop a data dictionary to define the data types collected by each IPCHiP cohort. Adopt GA4GH technical models and tools to ensure compliance with global standards. Run data through workflows to harmonize into a common format where possible. |
Size of genomic data | Data will remain where it is generated and not be transferred between sites. |
Consent to share data | Participants in IPCHiP cohorts are consented prospectively for data sharing with IPCHiP partners. |
Navigating differing privacy regulations across jurisdictions | Utilize federated approaches to obviate policy and legal restrictions around moving or copying data internationally. |
Maintaining organizational independence and security | Institutions will preserve data control, security, and accountability via the utilization of a federated approach. |
Infrastructure and costs required for data sharing | Highlight data sharing as an investment necessary to accelerate precision child health. |
