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

Nature Medicine volume 22, pages 464–471 (2016)Cite this article

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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.

Author information

Author notes

  1. Lillian L Siu and Mark Lawler: These authors contributed equally to this work.

Authors and Affiliations

  1. Princess Margaret Cancer Centre, University of Toronto, Toronto, Canada

    Lillian L Siu & Jeremy Lewin

  2. Centre for Cancer Research and Cell Biology, Queen's University, Belfast, UK

    Mark Lawler

  3. UC Santa Cruz Genomics Institute, University of California, Santa Cruz, California, USA

    David Haussler

  4. Centre of Genomics and Policy, McGill University, Montreal, Canada

    Bartha Maria Knoppers

  5. The Netherlands Cancer Institute, Amsterdam, the Netherlands

    Daniel J Vis & Emile E Voest

  6. The Global Alliance for Genomics and Health, Toronto, Canada

    Rachel G Liao

  7. Gustave Roussy and Université Paris Sud, Villejuif, France

    Fabrice Andre

  8. Patient's Advocacy Committee, European Cancer Organization, Brussels, Belgium

    Ian Banks

  9. Translational Sciences, Oncology iMED, AstraZeneca, Waltham, Massachusetts, USA

    J Carl Barrett

  10. Department of Oncology, University of Cambridge, Cambridge, UK

    Carlos Caldas & Rebecca C Fitzgerald

  11. Hospital Sírio-Libanês, São Paulo, Brazil

    Anamaria Aranha Camargo

  12. Yonsei Cancer Research Institute, Yonsei University College of Medicine, Seoul, Korea

    Mao Mao

  13. Kaiser Permanente, Pasadena, California, USA

    John E Mattison

  14. Roche Innovation Center Basel, Pharma Research and Early Development, Roche, Basel, Switzerland

    William Pao

  15. Novartis Institutes for Biomedical Research, Cambridge, Massachusetts, USA

    William R Sellers

  16. Advocacy for Canadian Children Oncology Network, Vancouver, Canada

    Patrick Sullivan

  17. National Cancer Centre Singapore, Singapore

    Bin Tean Teh

  18. University of Queensland, St. Lucia, Australia

    Robyn L Ward

  19. The Cancer Genome Atlas, National Cancer Institute, National Institutes of Health, Bethesda, Maryland, USA

    Jean Claude ZenKlusen

  20. Memorial Sloan Kettering Cancer Center, New York, New York, USA

    Charles L Sawyers

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Correspondence to Mark Lawler.

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Competing interests

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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