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

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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.
Keywords
Health Policy, Issues, ethics and legal aspects, Health(social science)

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MLA
Ferretti, Agata, et al. “Ethics Review of Big Data Research : What Should Stay and What Should Be Reformed?” BMC MEDICAL ETHICS, vol. 22, 2021, doi:10.1186/s12910-021-00616-4.
APA
Ferretti, A., Ienca, M., Sheehan, M., Blasimme, A., Dove, E. S., Farsides, B., … Vayena, E. (2021). Ethics review of big data research : what should stay and what should be reformed? BMC MEDICAL ETHICS, 22. https://doi.org/10.1186/s12910-021-00616-4
Chicago author-date
Ferretti, Agata, Marcello Ienca, Mark Sheehan, Alessandro Blasimme, Edward S. Dove, Bobbie Farsides, Phoebe Friesen, et al. 2021. “Ethics Review of Big Data Research : What Should Stay and What Should Be Reformed?” BMC MEDICAL ETHICS 22. https://doi.org/10.1186/s12910-021-00616-4.
Chicago author-date (all authors)
Ferretti, Agata, Marcello Ienca, Mark Sheehan, Alessandro Blasimme, Edward S. Dove, Bobbie Farsides, Phoebe Friesen, Jeff Kahn, Walter Karlen, Peter Kleist, S. Matthew Liao, Camille Nebeker, Gabrielle Samuel, Mahsa Shabani, Minerva Rivas Velarde, and Effy Vayena. 2021. “Ethics Review of Big Data Research : What Should Stay and What Should Be Reformed?” BMC MEDICAL ETHICS 22. doi:10.1186/s12910-021-00616-4.
Vancouver
1.
Ferretti A, Ienca M, Sheehan M, Blasimme A, Dove ES, Farsides B, et al. Ethics review of big data research : what should stay and what should be reformed? BMC MEDICAL ETHICS. 2021;22.
IEEE
[1]
A. Ferretti et al., “Ethics review of big data research : what should stay and what should be reformed?,” BMC MEDICAL ETHICS, vol. 22, 2021.
@article{8706750,
  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.}},
  articleno    = {{51}},
  author       = {{Ferretti, Agata and Ienca, Marcello and Sheehan, Mark and Blasimme, Alessandro and Dove, Edward S. and Farsides, Bobbie and Friesen, Phoebe and Kahn, Jeff and Karlen, Walter and Kleist, Peter and Liao, S. Matthew and Nebeker, Camille and Samuel, Gabrielle and Shabani, Mahsa and Rivas Velarde, Minerva and Vayena, Effy}},
  issn         = {{1472-6939}},
  journal      = {{BMC MEDICAL ETHICS}},
  keywords     = {{Health Policy,Issues,ethics and legal aspects,Health(social science)}},
  language     = {{eng}},
  pages        = {{13}},
  title        = {{Ethics review of big data research : what should stay and what should be reformed?}},
  url          = {{http://dx.doi.org/10.1186/s12910-021-00616-4}},
  volume       = {{22}},
  year         = {{2021}},
}

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