We have written recently about our belief that the required membership of HRECs in Australia should be expanded to include computer scientists. This research on Swiss IRBs, points to a similar need for research ethics committees established using the US HRPP arrangements. Big data in human research can raise significant ethical challenges that most ‘correctly established’ research ethics committees are ill-equipped to identify and advise on.
Big data trends in health research challenge the oversight mechanism of the Research Ethics Committees (RECs). The traditional standards of research quality and the mandate of RECs illuminate deficits in facing the computational complexity, methodological novelty, and limited auditability of these approaches. To better understand the challenges facing RECs, we explored the perspectives and attitudes of the members of the seven Swiss Cantonal RECs via semi-structured qualitative interviews. Our interviews reveal limited experience among REC members with the review of big data research, insufficient expertise in data science, and uncertainty about how to mitigate big data research risks. Nonetheless, RECs could strengthen their oversight by training in data science and big data ethics, complementing their role with external experts and ad hoc boards, and introducing precise shared practices.
Keywords
big data, research ethics, ethics, IRBs, biomedical research, responsible research
Ferretti, A., Ienca, M., Velarde, M. R., Hurst, S., & Vayena, E. (2022). The Challenges of Big Data for Research Ethics Committees: A Qualitative Swiss Study. Journal of Empirical Research on Human Research Ethics, 17(1–2), 129–143. https://doi.org/10.1177/15562646211053538
Publisher (Open Access): https://journals.sagepub.com/doi/10.1177/15562646211053538
