Apropos Data Sharing: Abandon the Distrust and Embrace the Opportunity | DNA and Cell Biology
peter.suber's bookmarks 2021-12-30
Abstract: In this commentary, we focus on the ethical challenges of data sharing and its potential in supporting biomedical research. Taking human genomics (HG) and European governance for sharing genomic data as a case study, we consider how to balance competing rights and interests—balancing protection of the privacy of data subjects and data security, with scientific progress and the need to promote public health. This is of particular relevancy in light of the current pandemic, which stresses the urgent need for international collaborations to promote health for all. We draw from existing ethical codes for data sharing in HG to offer recommendations as to how to protect rights while fostering scientific research and open science.