Building National and International Genomic Data Sharing Initiatives

Abstract

Rapid and affordable molecular profiling has led to an explosion of clinical and genomic data to enhance the diagnosis, prognostication and treatment of cancer. Whereas institutions and groups functioning in relative isolation have contributed to bring genomic sequencing to the spotlight, the analysis and storage of annotated clinical and genomic information in unconnected silos significantly limit the collective benefit of data sharing. A globalised approach is needed to create an environment that fosters big data learning. In this presentation, national and international data sharing initiatives are highlighted with an emphasis on the establishment of information technology infrastructure that empowers intra- and inter-institutional communication. Multiple big data initiatives such as AACR’s GENIE, ASCO’s CancerLINQ, NCI’s Genomic Data Commons, etc., have emerged over the past few years. Quality assurance of the merged data and the careful collection of long-term outcomes are important considerations to ensure utility of such initiatives. The Global Alliance for Genomic Health (GA4GH), established with the goal to create a common framework of unifying approaches to enable the responsible, voluntary, and secure sharing of clinical and genomic data, has created many resources to help translate such goals into practice.