Building consensus on genomic data sharing

2 August 2017

The National Data Guardian’s office has published a paper to help build consensus on data sharing for NHS clinical genetics and genomics services.

The paper draws on an evidence session held in October 2016 by the NDG office, with collaboration from the PHG Foundation and the Association for Clinical Genomic Science (ACGS). 
Welcoming the paper, the Head of Science at the PHG Foundation, Dr Sobia Raza said “Sharing genomic variant data is a necessary part of clinical care and NHS service delivery. Our joint workshop with the ACGS in 2015 highlighted the urgent need for national agreement on this issue including a common understanding of the legitimacy of data sharing.”

The NDG’s 2016 Review of Data Security, Consent and Opt-Outs, acknowledged the potential of genomics in healthcare but did not cover data sharing in this context in any detail. The NDG subsequently discussed with the PHG Foundation and the ACGS, the possibility of undertaking further work to explore developing a consensus on genomic data sharing in clinical genetics and genomics. An evidence session was held by the NDG in October 2016, convening a range of interested parties, from clinical geneticists and clinical scientists, to legal and health policy experts.

A strong message at the meeting from the clinical genetics professionals was that data sharing to support clinical genetics and genomics services is ‘necessary and urgent’ for patient safety. Building on the findings in the meeting, the NDG suggests two key next steps in the paper. These are the need for further work to explore appropriate consent for routine NHS clinical genetics and genomics services and a Privacy Impact Assessment (PIA) process to examine the suitable arrangements for genomic data sharing within the NHS.

PHG Foundation’s work on genomic data sharing for patient benefit can be viewed here.


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