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The International Cancer Genome Consortium's evolving data-protection policies

Nature Biotechnology volume 32, pages 519–523 (2014)Cite this article

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To the Editor:

The International Cancer Genome Consortium (ICGC) is an international initiative launched in 2008 to coordinate large-scale cancer genome studies from 50 different cancer types and subtypes of global clinical and societal importance. As of May 2014, 74 project teams in 17 countries in Asia, Australia, Europe and North America are analyzing more than 25,000 tumor genomes (http://www.icgc.org/). In addition to its goal of generating comprehensive catalogs of genomic abnormalities to facilitate better understanding, treatment and prevention of cancer, ICGC is committed to making the data it generates available to the international research community as rapidly as possible, with minimal restrictions on appropriate data use. Here, we describe the experience of ICGC in addressing privacy and confidentiality issues raised by recent articles that expose re-identification threats for research participants.

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Acknowledgements

The authors wish to express their thanks both to members of ICGC and to data users, whose questions and feedback have been instrumental in the design and implementation of open and controlled access application procedures. The authors are also grateful to Thomas J. Hudson and Jennifer Jennings of the Ontario Institute for Cancer Research (OICR) for their invaluable assistance. All authors are members of the ICGC Working Group on Identifiability and Privacy.

Author information

Authors and Affiliations

  1. Centre of Genomics and Policy, McGill University, Montreal, Quebec, Canada

    Djims Milius, Edward S Dove & Yann Joly

  2. Faculty of Law, University of Tasmania, Tasmania, Australia

    Donald Chalmers

  3. Wellcome Trust Sanger Institute, Hinxton, Cambridge, UK

    Stephanie O M Dyke

  4. Department of Biomedical Ethics and Public Policy, Graduate School of Medicine, Osaka University, Osaka, Japan

    Kazuto Kato

  5. Interuniversity Chair in Law and the Human Genome, Universidad de Deusto, Universidad del País Vasco, Bilbao, Spain

    Pilar Nicolás

  6. Informatics and Biocomputing Program, Ontario Institute for Cancer Research, Toronto, Canada

    BF Francis Ouellette

  7. Department of Cell and Systems Biology, University of Toronto, Toronto, Canada

    BF Francis Ouellette

  8. National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland, USA

    Brad Ozenberger & Laura L Rodriguez

  9. School of Pathology and Laboratory Medicine, The University of Western Australia, Crawley, Western Australia, Australia

    Nikolajs Zeps

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  1. Djims Milius
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  2. Edward S Dove
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  4. Stephanie O M Dyke
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  6. Pilar Nicolás
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  9. Laura L Rodriguez
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Correspondence to Yann Joly.

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Milius, D., Dove, E., Chalmers, D. et al. The International Cancer Genome Consortium's evolving data-protection policies. Nat Biotechnol 32, 519–523 (2014). https://doi.org/10.1038/nbt.2926

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