The challenges of data sharing

The work

Building on our previous work examining the implications of whole exome and genome sequencing on clinical services, we collaborated with the Association of Clinical Genetics Science (ACGS) to specifically consider the challenges to data sharing and to develop priorities for policy development to support clinical genetics and genomics services.

Read the report Data sharing to support UK clinical genetic and genomics practice

The motivation

Access to high quality genetic / genomic data and associated clinical and phenotypic data is fundamental to the delivery of safe and effective diagnostic services, but NHS clinical genetic / genomics services face considerable challenges to accessing and sharing the necessary data.

What we did

  • Convened a high-level multidisciplinary meeting, including the National Data Guardian for Health and Care, to discuss the most pressing challenges around data sharing
  • Examined existing data-sharing practice – and perceived impediments, by surveying clinical genetics laboratories in advance of the joint workshop and one year later 
  • Developed consensus including eleven recommendations to improve, optimise, and transform data sharing practice for patient benefit through a responsible and proportionate approach
  • Followed a sustained advocacy and engagement plan, by discussing or presenting our recommendations throughout 2015/16 to relevant meetings; including the Human Variome Project (HVP), 100,000 Genomes Project Ethics Advisory Committee and at the European Society of Human Genetics annual conference 2016

Impact

  • The National Data Guardian’s Report on data security, consent and opt-outs cited our joint report in reference to the issues around genomic data sharing noting ‘a number of commendable recommendations’ have been made 
  • We have been invited by the National Data Guardian’s Office, along with the ACGS to collaborate in an evidence session on genomic data sharing in the NHS
  • Two other countries are planning similar workshops inspired by our approach – following a presentation to the biennial HVP meeting at UNESCO Paris (2016)