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

J Empir Res Hum Res Ethics

Health Ethics and Policy Lab, Department of Health Sciences and Technology, 27219ETH Zürich, Switzerland.

Published: March 2022

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.

Download full-text PDF

Source
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8721531PMC
http://dx.doi.org/10.1177/15562646211053538DOI Listing

Publication Analysis

Top Keywords

big data
20
data ethics
8
ethics committees
8
data science
8
data
7
recs
5
challenges big
4
committees qualitative
4
qualitative swiss
4
swiss study
4

Similar Publications

The commercial roots of the genomic commons.

Soc Stud Sci

January 2025

Science, Technology and Innovation Studies, The University of Edinburgh, Edinburgh, Scotland, UK.

Accounts of the origins of the genomic commons typically focus on the development of public repositories and data-sharing agreements. This article tells a different story. During the 1990s in the United States, efforts of private companies to prevent the patenting of certain kinds of DNA sequences were essentially a conservative response to shifts in the sociotechnical constitution of the pharmaceutical innovation system, and to the operation of intellectual property as one of the key knowledge control regimes that regulate that system.

View Article and Find Full Text PDF

Long-term use of low-dose aspirin has been demonstrated to reduce cancer risk, but the duration of necessary medication use remains uncertain. This study aimed to investigate the long-term chemoprotective effect of aspirin among the Chinese population. This population-based study included all aspirin users between 2000 and 2019.

View Article and Find Full Text PDF

Are psychological attitudes towards vaccination an expression of personality? A cross-sectional study on COVID-19 vaccination in France.

BMC Public Health

January 2025

Emerging Diseases Epidemiology Unit, Institut Pasteur, 25-28 Rue du Docteur Roux, Bâtiment Laveran, Paris, 75015, France.

Background: The capacity of the 7C model's psychological antecedents, which include confidence in vaccines, complacency, convenience, calculation, collective responsibility, confidence in the wider system, and social conformism, to explain variance in COVID-19 vaccine intentions and behaviours has been documented. However, it remains unclear whether the attitudes represented by the 7C psychological antecedents are specific to vaccination or if they are, in fact, an expression of underlying personality traits.

Methods: From February to June 2022, French adults completed self-administered questionnaires assessing COVID-19 vaccination history, the 7C antecedents, and personality traits ("ComCor" and "Cognitiv" studies).

View Article and Find Full Text PDF

In this study, we introduce a coupled fractional system consisting of two fluctuating-mass oscillators with time delay and investigate their collective resonant behaviors. First, we achieve complete synchronization between the average behaviors of these oscillators. We then derive the exact analytical expression for the output amplitude gain, and based on this, we observe generalized stochastic resonance (GSR) in the system.

View Article and Find Full Text PDF

Genome-wide association studies (GWASs) have identified numerous genetic variants associated with complex traits, yet the biological interpretation remains challenging, especially for variants in non-coding regions. Expression quantitative trait locus (eQTL) studies have linked these variations to gene expression, aiding in identifying genes involved in disease mechanisms. Traditional eQTL analyses using bulk RNA sequencing (bulk RNA-seq) provide tissue-level insights but suffer from signal loss and distortion due to unaddressed cellular heterogeneity.

View Article and Find Full Text PDF

Want AI Summaries of new PubMed Abstracts delivered to your In-box?

Enter search terms and have AI summaries delivered each week - change queries or unsubscribe any time!