Author: Marcello Ienca, Agata Ferretti, Samia Hurst, Milo Puhan, Christian Lovis, Effy Vayena
Publisher: National Library of Medicine
Publication Year: 2018
Summary: The following article discusses how big data trends in biomedical and health research enable large-scale and multi-dimensional aggregation and analysis of heterogeneous data sources, which could ultimately result in preventive, diagnostic and therapeutic benefit. The methodological novelty and computational complexity of big data health research raises novel challenges for ethics review. This study conducts a scoping review of the literature using 5 databases to identify and map the major challenges of health-related big data for Ethics Review Committees. The findings suggest that while big data trends in biomedicine hold the potential for advancing clinical research, improving prevention and optimizing healthcare delivery, yet several epistemic, scientific and normative challenges need careful consideration. These challenges have relevance for both the composition of ERCs and the evaluation criteria that should be employed by ERC members when assessing the methodological and ethical viability of health-related big data studies.