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The Challenges of Big Data for Research Ethics Committees: A Qualitative Swiss Study

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 a...

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Autores principales: Ferretti, Agata, Ienca, Marcello, Velarde, Minerva Rivas, Hurst, Samia, Vayena, Effy
Formato: Online Artículo Texto
Lenguaje:English
Publicado: SAGE Publications 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8721531/
https://www.ncbi.nlm.nih.gov/pubmed/34779661
http://dx.doi.org/10.1177/15562646211053538
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author Ferretti, Agata
Ienca, Marcello
Velarde, Minerva Rivas
Hurst, Samia
Vayena, Effy
author_facet Ferretti, Agata
Ienca, Marcello
Velarde, Minerva Rivas
Hurst, Samia
Vayena, Effy
author_sort Ferretti, Agata
collection PubMed
description 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.
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spelling pubmed-87215312022-01-04 The Challenges of Big Data for Research Ethics Committees: A Qualitative Swiss Study Ferretti, Agata Ienca, Marcello Velarde, Minerva Rivas Hurst, Samia Vayena, Effy J Empir Res Hum Res Ethics Empirical Studies on Ethical Issues in Big Data and Data Sharing 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. SAGE Publications 2021-11-15 2022-02 /pmc/articles/PMC8721531/ /pubmed/34779661 http://dx.doi.org/10.1177/15562646211053538 Text en © The Author(s) 2021 https://creativecommons.org/licenses/by-nc/4.0/This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (https://creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page (https://us.sagepub.com/en-us/nam/open-access-at-sage).
spellingShingle Empirical Studies on Ethical Issues in Big Data and Data Sharing
Ferretti, Agata
Ienca, Marcello
Velarde, Minerva Rivas
Hurst, Samia
Vayena, Effy
The Challenges of Big Data for Research Ethics Committees: A Qualitative Swiss Study
title The Challenges of Big Data for Research Ethics Committees: A Qualitative Swiss Study
title_full The Challenges of Big Data for Research Ethics Committees: A Qualitative Swiss Study
title_fullStr The Challenges of Big Data for Research Ethics Committees: A Qualitative Swiss Study
title_full_unstemmed The Challenges of Big Data for Research Ethics Committees: A Qualitative Swiss Study
title_short The Challenges of Big Data for Research Ethics Committees: A Qualitative Swiss Study
title_sort challenges of big data for research ethics committees: a qualitative swiss study
topic Empirical Studies on Ethical Issues in Big Data and Data Sharing
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8721531/
https://www.ncbi.nlm.nih.gov/pubmed/34779661
http://dx.doi.org/10.1177/15562646211053538
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