Open Sharing of Neuroscience Data in the Canadian Context

Open sharing of research data is crucial to advancing our understanding of the human brain and discovering treatments for neuropsychiatric disorders. It is critical, however, to balance these goals with participant rights to privacy and confidentiality. We discuss the ethics of practicing open neuroscience at Baycrest Academy for Research and Education (BARE), a small but prominent Canadian neuroscience research institute based in a geriatric hospital. Through a systematic documentary analysis of applications for ethical approval, consent forms and study protocols, we report on data sharing trends and participant consent rates at the institute. Following a significant increase over recent years, 60% of studies launched since 2023 plan to share data, of which 80% are obtaining optional consent. Analysis of optional consent rates from 2433 participants enrolled in 29 studies revealed that 98% agreed to sharing their research data for unspecified future use. In addition to setting a benchmark for open data sharing in Canadian neuroscience institutes, we provide actionable recommendations for institutes to support their researchers in sharing neuroscience data openly, ethically, and responsibly.