Genomic data sharing for patient benefit

31 October 2016

We are examining ways to improve and support the responsible sharing of data by NHS clinical genetics / genomics services for patient benefit, patient safety and service quality

Why data sharing matters

Advances in genomic medicine services in the NHS offer an unprecedented opportunity to determine the genetic basis of thousands of undiagnosed rare diseases and improve care. Fundamental to the delivery of safe and effective diagnostic services is access to high quality genomic and clinical patient data. But NHS clinical genetics / genomics services face considerable challenges to accessing and sharing the necessary data. We have been finding out what those challenges are and identifying priorities for policy development that can enable data to be shared effectively and responsibly for greater patient benefit.

What we are doing

PHG Foundation has previously carried out work examining the implications of whole exome and genome sequencing on clinical services which identified data sharing as a key priority for these technologies to be deployed effectively for clinical benefit. Building on this work we collaborated with the Association of Clinical Genetics Science (ACGS) to evaluate the challenges to data sharing and to provide recommendations for policy development.

Timeline

Our position

Sharing genetic and genomic data and associated clinical and phenotypic data is vital to good clinical care and routine NHS genomics service delivery. There is an urgent need for national agreement and strong leadership to address the multifaceted challenges to data sharing, and to optimise sharing for patient benefit.

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