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 from 244 studies, we report on data sharing trends and participant consent rates at the institute. We found that overall, 52% of these studies planned to share data. Following a significant increase over recent years, over 60% of the 91 studies launched since 2023 have data sharing plans, of which 80% (44/55) are obtaining optional consent. Analysis of optional consent rates from 2912 participants enrolled in 33 studies revealed that over 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.
Olsen et al. (Thu,) studied this question.