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    Ethics review of big data research: What should stay and what should be reformed?


    Ferretti, Agata, Ienca, Marcello, Sheehan, Mark, Blasimme, Alessandro, Dove, Edward, Farsides, Bobbie, Friesen, Phoebe, Kahn, Jeff, Karlen, Walter, Kleist, Peter, Liao, S. Matthew, Nebeker, Camille, Samuel, Gabrielle, Shabani, Mahsa, Rivas Velarde, Minerva and Vayena, Effy (2021) Ethics review of big data research: What should stay and what should be reformed? BMC Medical Ethics, 22 (1). ISSN 1472-6939

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    Abstract

    Background Ethics review is the process of assessing the ethics of research involving humans. The Ethics Review Committee (ERC) is the key oversight mechanism designated to ensure ethics review. Whether or not this governance mechanism is still fit for purpose in the data-driven research context remains a debated issue among research ethics experts. Main text In this article, we seek to address this issue in a twofold manner. First, we review the strengths and weaknesses of ERCs in ensuring ethical oversight. Second, we map these strengths and weaknesses onto specific challenges raised by big data research. We distinguish two categories of potential weakness. The first category concerns persistent weaknesses, i.e., those which are not specific to big data research, but may be exacerbated by it. The second category concerns novel weaknesses, i.e., those which are created by and inherent to big data projects. Within this second category, we further distinguish between purview weaknesses related to the ERC’s scope (e.g., how big data projects may evade ERC review) and functional weaknesses, related to the ERC’s way of operating. Based on this analysis, we propose reforms aimed at improving the oversight capacity of ERCs in the era of big data science. Conclusions We believe the oversight mechanism could benefit from these reforms because they will help to overcome data-intensive research challenges and consequently benefit research at large.
    Item Type: Article
    Keywords: Big data; Research ethics; Ethics; IRBs; RECs; Ethics review; Biomedical research;
    Academic Unit: Assisting Living & Learning,ALL institute
    Faculty of Social Sciences > Law
    Item ID: 19898
    Identification Number: 10.1186/s12910-021-00616-4
    Depositing User: Edward Dove
    Date Deposited: 27 May 2025 11:55
    Journal or Publication Title: BMC Medical Ethics
    Publisher: BMC
    Refereed: Yes
    Related URLs:
    URI: https://mural.maynoothuniversity.ie/id/eprint/19898
    Use Licence: This item is available under a Creative Commons Attribution Non Commercial Share Alike Licence (CC BY-NC-SA). Details of this licence are available here

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