Data sharing to support UK clinical genetics and genomics services
PHE ePoster Library. Hall A. Sep 12, 2017; 186485; 153
Alison Hall
Alison Hall
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Abstract
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Abstract Access to high quality data on genomic variants and associated clinical information is fundamental to the delivery of clinical genetics diagnostic services. A complex interplay of practical, technical, legal and regulatory factors are currently impeding the ability of NHS clinical genetics laboratories to share and access the necessary data. Among the most significant challenges are (a) lack of a designated sustainable infrastructure or mechanism for laboratories to share data and (b) inconsistent guidance issued by local NHS Trusts to individual laboratories across the country on what constitutes acceptable practice with regards to the sharing of rare genetic variants which may be considered personally identifiable information. The PHG Foundation in association with the UK's Association for Clinical Genetic Science, co-hosted a workshop to examine the most pressing challenges around data sharing and to identify priority areas for policy development. Our analysis highlighted that the current arrangements for sharing genomic variants within the NHS is unsatisfactory and inconsistent practices are causing significant difference in patient care and are compromising quality and safety. There is an urgent need for (i) national agreement on the legitimacy of data sharing, (ii) standardised operational processes, including a designated sustainable database or mechanism for sharing, (iii) strong leadership by the multiple relevant health organisations to demonstrate the benefits and risks associated with sharing and not sharing data. In concert these recommendations will go some way towards improving consistency in practice and building trust and confidence amongst patients, the public and healthcare professionals. External funding details Funding from PHGF and ACGS
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