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    A decision tool to guide the ethics review of a challenging breed of emerging genomic projects

    Access Status
    Open access via publisher
    Authors
    Joly, Y.
    So, D.
    Osien, G.
    Crimi, L.
    Bobrow, M.
    Chalmers, D.
    Wallace, S.
    Zeps, Nikolajs
    Knoppers, B.
    Date
    2016
    Type
    Journal Article
    
    Metadata
    Show full item record
    Citation
    Joly, Y. and So, D. and Osien, G. and Crimi, L. and Bobrow, M. and Chalmers, D. and Wallace, S. et al. 2016. A decision tool to guide the ethics review of a challenging breed of emerging genomic projects. European Journal of Human Genetics. 24: pp. 1099-1103.
    Source Title
    European Journal of Human Genetics
    DOI
    10.1038/ejhg.2015.279
    ISSN
    1018-4813
    URI
    http://hdl.handle.net/20.500.11937/18596
    Collection
    • Curtin Research Publications
    Abstract

    Recent projects conducted by the International Cancer Genome Consortium (ICGC) have raised the important issue of distinguishing quality assurance (QA) activities from research in the context of genomics. Research was historically defined as a systematic effort to expand a shared body of knowledge, whereas QA was defined as an effort to ascertain whether a specific project met desired standards. However, the two categories increasingly overlap due to advances in bioinformatics and the shift toward open science. As few ethics review policies take these changes into account, it is often difficult to determine the appropriate level of review. Mislabeling can result in unnecessary burdens for the investigators or, conversely, in underestimation of the risks to participants. Therefore, it is important to develop a consistent method of selecting the review process for genomics and bioinformatics projects. This paper begins by discussing two case studies from the ICGC, followed by a literature review on the distinction between QA and research and a comparative analysis of ethics review policies from Canada, the United States, the United Kingdom, and Australia. These results are synthesized into a novel two-step decision tool for researchers and policymakers, which uses traditional criteria to sort clearly defined activities while requiring the use of actual risk levels to decide more complex cases.European Journal of Human Genetics advance online publication, 20 January 2016; doi:10.1038/ejhg.2015.279.

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