Poster ID
P-22
Poster Title
“SafeGUARDS”: an international principles-based governance framework for the data science community
Authors
Rachel Brophy, Head of Information Governance, HDR UK.
Cassie Smith, Director of Legal, Trust & Ethics, HDR UK.
Andy Boyd, Director of UK Longitudinal Linkage Collaboration (UK LLC), University of Bristol.
Cassie Smith, Director of Legal, Trust & Ethics, HDR UK.
Andy Boyd, Director of UK Longitudinal Linkage Collaboration (UK LLC), University of Bristol.
Abstract
Processes and policies governing data use remain inconsistent, complex, slow, and may encourage disproportionate caution in decision-making. These challenges were brought into sharper focus during the COVID-19 pandemic, when the Science Academies of the G7 nations called for coherent, transparent and principles-led governance to support rapid and responsible data use, earn public trust and respond to global challenges. Past failures of data-intensive initiatives further demonstrate that maintaining a “social licence” is essential for public acceptability.
The Five Safes, UNESCO Open Science, FAIR, and CARE principles, together with sector-specific frameworks, provide strong foundations for safe, responsible and open data use. Within genomics, the GA4GH Framework for Responsible Sharing of Genomic and Health-Related Data and its associated standards and policy tools provide vital foundations for responsible international data sharing. However, challenges remain in translating multiple principles, standards, and requirements into consistent, proportionate, and accountable governance across organizations and jurisdictions.
We developed the GUARDS principles to provide a coherent, cross-cutting articulation of expectations for data use governance, spanning public involvement, transparency, alignment, responsibility, delivery, and stewardship. Combined with the Five Safes, they form SafeGUARDS: a principles-based framework that operates as an enabling layer across existing approaches, supporting their consistent interpretation and proportionate, transparent, and accountable application.
SafeGUARDS complements, rather than replaces, established frameworks and tools. For the GA4GH community, it offers a means of connecting technical and policy standards with wider ethical, societal, legal, organizational and professional responsibilities, particularly where genomic data are shared internationally, linked with other data or used in emerging technologies.
International collaboration has already informed the framework, including engagement with the international population data science community. The next phase will involve broader international and cross-sector consultation, including with genomics stakeholders, to test and refine SafeGUARDS and ensure it is relevant, applicable, and adaptable across the global data science community. Accompanying resources and maturity aspirations will support implementation, organisational alignment and continuous improvement.
The Five Safes, UNESCO Open Science, FAIR, and CARE principles, together with sector-specific frameworks, provide strong foundations for safe, responsible and open data use. Within genomics, the GA4GH Framework for Responsible Sharing of Genomic and Health-Related Data and its associated standards and policy tools provide vital foundations for responsible international data sharing. However, challenges remain in translating multiple principles, standards, and requirements into consistent, proportionate, and accountable governance across organizations and jurisdictions.
We developed the GUARDS principles to provide a coherent, cross-cutting articulation of expectations for data use governance, spanning public involvement, transparency, alignment, responsibility, delivery, and stewardship. Combined with the Five Safes, they form SafeGUARDS: a principles-based framework that operates as an enabling layer across existing approaches, supporting their consistent interpretation and proportionate, transparent, and accountable application.
SafeGUARDS complements, rather than replaces, established frameworks and tools. For the GA4GH community, it offers a means of connecting technical and policy standards with wider ethical, societal, legal, organizational and professional responsibilities, particularly where genomic data are shared internationally, linked with other data or used in emerging technologies.
International collaboration has already informed the framework, including engagement with the international population data science community. The next phase will involve broader international and cross-sector consultation, including with genomics stakeholders, to test and refine SafeGUARDS and ensure it is relevant, applicable, and adaptable across the global data science community. Accompanying resources and maturity aspirations will support implementation, organisational alignment and continuous improvement.