Cargando…
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...
Autores principales: | , , , , |
---|---|
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 |
_version_ | 1784625360914087936 |
---|---|
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. |
format | Online Article Text |
id | pubmed-8721531 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2021 |
publisher | SAGE Publications |
record_format | MEDLINE/PubMed |
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 |
work_keys_str_mv | AT ferrettiagata thechallengesofbigdataforresearchethicscommitteesaqualitativeswissstudy AT iencamarcello thechallengesofbigdataforresearchethicscommitteesaqualitativeswissstudy AT velardeminervarivas thechallengesofbigdataforresearchethicscommitteesaqualitativeswissstudy AT hurstsamia thechallengesofbigdataforresearchethicscommitteesaqualitativeswissstudy AT vayenaeffy thechallengesofbigdataforresearchethicscommitteesaqualitativeswissstudy AT ferrettiagata challengesofbigdataforresearchethicscommitteesaqualitativeswissstudy AT iencamarcello challengesofbigdataforresearchethicscommitteesaqualitativeswissstudy AT velardeminervarivas challengesofbigdataforresearchethicscommitteesaqualitativeswissstudy AT hurstsamia challengesofbigdataforresearchethicscommitteesaqualitativeswissstudy AT vayenaeffy challengesofbigdataforresearchethicscommitteesaqualitativeswissstudy |