• DocumentCode
    3233671
  • Title

    Seeking a "Race to the Top" in Genomic Cloud Privacy?

  • Author

    Phillips, Mark ; Knoppers, Bartha M. ; Joly, Yann

  • Author_Institution
    Centre of Genomics & Policy, McGill Univ., Montreal, QC, Canada
  • fYear
    2015
  • fDate
    21-22 May 2015
  • Firstpage
    65
  • Lastpage
    69
  • Abstract
    The relationship between data-privacy lawmakers and genomics researchers may have gotten off on the wrong foot. Critics of protectionism in the current laws advocate that we abandon the existing paradigm, which was formulated in an entirely different medical research context. Genomic research no longer requires physically risky interventions that directly affect participants´ integrity. But to simply strip away these protections for the benefit of research projects neglects not only new concerns about data privacy, but also broader interests that research participants have in the research process. Protectionism and privacy should not be treated as unwelcome anachronisms. We should instead seek to develop an updated, positive framework for data privacy and participant participation and collective autonomy. It is beginning to become possible to imagine this new framework, by reflecting on new developments in genomics and bioinformatics, such as secure remote processing, data commons, and health data co-operatives.
  • Keywords
    bioinformatics; cloud computing; data privacy; genomics; security of data; bioinformatics; collective autonomy; data commons; data privacy; genomic cloud privacy; genomics research; health data cooperatives; medical research; participant participation; protectionism; secure remote processing; Bioinformatics; Cloud computing; Context; Data privacy; Genomics; Law; Privacy; cloud computing; data protection; genomics; health data co-operatives; privacy;
  • fLanguage
    English
  • Publisher
    ieee
  • Conference_Titel
    Security and Privacy Workshops (SPW), 2015 IEEE
  • Conference_Location
    San Jose, CA
  • Type

    conf

  • DOI
    10.1109/SPW.2015.26
  • Filename
    7163210