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Genomics: data sharing needs an international code of conduct

Efforts to protect people’s privacy in a massive international cancer project offer lessons for data sharing.
By
  1. Mark Phillips

    1. Mark Phillips is an academic associate at the Centre of Genomics and Policy, McGill University, Montreal, Canada, and a lawyer who advises clients on data protection

  2. Fruzsina Molnár-Gábor

    1. Fruzsina Molnár-Gábor is research group leader at the Heidelberg Academy of Sciences and Humanities, Heidelberg, Germany.

  3. Jan O. Korbel

    1. Jan O. Korbel is a senior scientist at the European Molecular Biology Laboratory, Heidelberg, Germany.

  4. Adrian Thorogood

    1. Adrian Thorogood is an academic associate at the Centre of Genomics and Policy, McGill University, Montreal, Canada.

  5. Yann Joly

    1. Yann Joly is associate professor at the Centre of Genomics and Policy, McGill University, and was the Data Access Control Officer for the International Cancer Genome Consortium (2009–18), including the PCAWG project.

  6. Don Chalmers

    1. Don Chalmers is distinguished professor of law at the University of Tasmania, Hobart, Australia.

  7. David Townend

    1. David Townend is professor of health and life science jurisprudence, CAPHRI Research School, Maastricht University, the Netherlands.

  8. Bartha M. Knoppers

    1. Bartha M. Knoppers is director of the Centre of Genomics and Policy, McGill University, Montreal, Canada.

More than 800 terabytes of genomic data are available to investigators all over the world, thanks to a major international project to identify the genetic traits associated with various types of cancer. Researchers involved have just published six papers in Nature. (Another 16 papers have been published elsewhere.)

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Nature 578, 31-33 (2020)

doi: https://doi.org/10.1038/d41586-020-00082-9

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Supplementary Information

  1. Full list of PCAWG consortium working groups and writing committee

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