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

Authors :
Ferretti A
Ienca M
Sheehan M
Blasimme A
Dove ES
Farsides B
Friesen P
Kahn J
Karlen W
Kleist P
Liao SM
Nebeker C
Samuel G
Shabani M
Rivas Velarde M
Vayena E
Source :
BMC medical ethics [BMC Med Ethics] 2021 Apr 30; Vol. 22 (1), pp. 51. Date of Electronic Publication: 2021 Apr 30.
Publication Year :
2021

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.<br />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.<br />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.

Details

Language :
English
ISSN :
1472-6939
Volume :
22
Issue :
1
Database :
MEDLINE
Journal :
BMC medical ethics
Publication Type :
Academic Journal
Accession number :
33931049
Full Text :
https://doi.org/10.1186/s12910-021-00616-4