s12910-021-00616-4.pdf (1.3 MB)
Ethics review of big data research: what should stay and what should be reformed?
journal contribution
posted on 2023-06-10, 00:45 authored by Agata Ferretti, Marcello Ienca, Mark Sheehan, Alessandro Blasimme, Edward S Dove, Bobbie FarsidesBobbie Farsides, Phoebe Friesen, Jeff Kahn, Walter Karlen, Peter Kleist, S Matthew Liao, Camille Nebeker, Gabrielle Samuel, Mahsa Shabani, Minerva Rivas Velarde, Effy VayenaBackground 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.
History
Publication status
- Published
File Version
- Published version
Journal
BMC Medical EthicsISSN
1472-6939Publisher
BMCExternal DOI
Issue
1Volume
22Page range
1-13Article number
a51Event location
EnglandDepartment affiliated with
- Clinical and Experimental Medicine Publications
Full text available
- Yes
Peer reviewed?
- Yes
Legacy Posted Date
2021-08-26First Open Access (FOA) Date
2021-08-26First Compliant Deposit (FCD) Date
2021-08-26Usage metrics
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