Published on: 12th July 2017
Last week, Professor Dame Sally Davies’s eighth independent report to government as Chief Medical Officer was published.
The report discusses the current state of genomic service provision in the NHS in England, exploring the potential of genomics to improve health and prevent ill-health. It presents evidence and observations around screening, diagnosing rare diseases and the use of genomics in personalised prevention. As well as highlighting shortfalls in infrastructure, public engagement, organisation of research and provision of services, the report makes recommendations to address these gaps and widen access to genomic services.
Chapter 13 dedicates 15 pages to solving the data challenges which arise from genomic data, stating:
“The legal and ethical framework, evolution of patient and public understanding and the nature of consent are central in decisions about how data are obtained, shared, stored and used and reused in genomic medicine. As the National Data Guardian points out in her third report, in genomic medicine traditional models of consent and information governance are not always appropriate because the longstanding distinction between research and clinical care becomes blurred and because of the identifiable nature of genomic data. Electronic mechanisms are needed to replace the current practices for researcher access to data which include paper-based agreements between users, institutions and data access committees.”
Within this chapter, Professor Harry Hemingway, Director of The Farr Institute’s London Centre, gives insight into the challenges surrounding lifelong electronic health records for genomic medicine.
Download the report, Chief Medical Officer Annual Report 2016: Generation Genome