Security and Privacy in the UK 100,000 Genomes Project

Jim Davies - University of Oxford & Genomics England Limited

The 100,000 Genomes Project is linking whole genome sequences to detailed accounts of diagnosis, treatment, and outcomes.The sequences come from patients with cancer or rare, inherited disorders who have consented to the use of their data to increase our understanding of disease and to accelerate the development of new diagnostics and new therapeutics. The patients are under the care of the National Health Service (NHS) in England, and NHS staff are identifying eligible patients, providing detailed clinical and laboratory data, and receiving reports based upon the interpretation of the sequences.These reports may lead to new diagnoses and – following confirmatory tests – to new treatment decisions. The Project has two objectives: to establish a flow of high-quality data for research, and to facilitate the adoption of genomic medicine in the NHS. In this talk, I will explain some of the social and technical challenges encountered in the delivery of the project, with a particular focus upon privacy and security.

About Jim Davies
Jim Davies is Professor of Software Engineering at the University of Oxford, Director of Informatics for the Oxford NIHR Biomedical Research Centre, and Chief Technology Officer of Genomics England Limited.  He leads a team of architects, engineers, and researchers working on model-driven approaches to software engineering and data management, with a particular focus upon semantic interoperability.

About Genomics England Limited
Genomics England is a wholly owned company of the Department of Health. Genomics England was set up to deliver the 100,000 Genomes Project: This flagship project will sequence 100,000 whole genomes from NHS patients and their families. More information here.