Centre of Genomics and Policy, Faculty of Medicine, McGill University, Canada.
Centre of Genomics and Policy, Faculty of Medicine, McGill University, Canada.
Neuroimage. 2021 Aug 1;236:118041. doi: 10.1016/j.neuroimage.2021.118041. Epub 2021 Apr 20.
Open Science is calling for a radical re-thinking of existing scientific practices. Within the neuroimaging community, Open Science practices are taking the form of open data repositories and open lab notebooks. The broad sharing of data that accompanies Open Science, however, raises some difficult ethical and legal issues. With neuroethics as a focusing lens, we explore eight central concerns posed by open data with regard to human brain imaging studies: respect for individuals and communities, concern for marginalized communities, consent, privacy protections, participatory research designs, contextual integrity, fusions of clinical and research goals, and incidental findings. Each consideration assists in bringing nuance to the potential benefits for open data sharing against associated challenges. We combine current understandings with forward-looking solutions to key issues. We conclude by underscoring the need for new policy tools to enhance the potential for responsible open data.
开放科学呼吁对现有科学实践进行彻底的重新思考。在神经影像学领域,开放科学实践的形式是开放的数据存储库和开放的实验室笔记本。然而,广泛的数据共享伴随着开放科学带来了一些困难的伦理和法律问题。我们以神经伦理学为焦点,探讨了开放数据对人脑成像研究提出的八项核心关注:尊重个人和社区、关注边缘化社区、同意、隐私保护、参与式研究设计、语境完整性、临床和研究目标的融合以及偶然发现。每一个考虑因素都有助于在开放数据共享的潜在好处与相关挑战之间取得平衡。我们将当前的理解与前瞻性的解决方案结合起来,解决关键问题。最后,我们强调需要新的政策工具来增强负责任的开放数据的潜力。