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Facilitating a culture of responsible and effective sharing of cancer genome data

Abstract

Rapid and affordable tumor molecular profiling has led to an explosion of clinical and genomic data poised to enhance the diagnosis, prognostication and treatment of cancer. A critical point has now been reached at which the analysis and storage of annotated clinical and genomic information in unconnected silos will stall the advancement of precision cancer care. Information systems must be harmonized to overcome the multiple technical and logistical barriers to data sharing. Against this backdrop, the Global Alliance for Genomic Health (GA4GH) was established in 2013 to create a common framework that enables responsible, voluntary and secure sharing of clinical and genomic data. This Perspective from the GA4GH Clinical Working Group Cancer Task Team highlights the data-aggregation challenges faced by the field, suggests potential collaborative solutions and describes how GA4GH can catalyze a harmonized data-sharing culture.

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Figure 1: Data-sharing vision as facilitated by GA4GH through its working groups, each of which focuses on particular data-sharing challenges: for example, Clinical Working Group, establish common data elements; Data Working Group, establish universal API standardization; Regulatory and Ethics Working Group, harmonize ethics processes; Security Working Group, establish data-access procedures.

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Acknowledgements

This manuscript is written on behalf of the GA4GH Clinical Working Group (WG). We thank the Data WG, Regulatory and Ethics WG and Security WG for their important contributions. L.L.S. is supported by the Cancer Care Ontario Research Chair and Applied Cancer Research Units Grant; M.L., C.C. and R.C.F. are supported by Cancer Research UK; D.H. is funded by the US National Institutes of Health (award #U54HG007990). B.M.K. is supported by the Quebec Breast Cancer Foundation; C.L.S. is supported by the Howard Hughes Medical Institute and US National Cancer Institute (Grant #CA008748); E.E.V. is supported by the Barcode for Life Foundation and the Hartwig Medical Foundation.

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Correspondence to Mark Lawler.

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J.C.B. is employed by AstraZeneca and is a stock owner of AstraZeneca. W.P. is employed by Roche, is a shareholder of Roche, has rights to EGFR T790M mutation testing (licensed to MolecularMD) and is a co-founder of MyCancerGenome. W.R.S. is employed by the Novartis Institute for Biomedical Research and is a shareholder of Novartis Pharma. C.L.S. serves on the Board of Novartis Pharma. All other authors declare no competing financial interests.

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Siu, L., Lawler, M., Haussler, D. et al. Facilitating a culture of responsible and effective sharing of cancer genome data. Nat Med 22, 464–471 (2016). https://doi.org/10.1038/nm.4089

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