We’re excited to share the CONP’s latest paper published in GigaScience, “Open Data Governance at the Canadian Open Neuroscience Platform (CONP): From the Walled Garden to the Arboretum“. This paper delves into the innovative strategies adopted by CONP to balance the accessibility of biomedical data with ethical and legal considerations.
Making biomedical data more accessible for research while ensuring the protection of research participants’ autonomy is among the CONP’s key objectives. To navigate this delicate balance, the CONP gathered experts in bioethics, neuroethics, and law to form its Ethics and Governance Committee. Together, they have developed comprehensive tools and approaches to align data sharing with ethical and legal norms. The paper identifies several pillars that form a practical approach to open data governance, including informed consent guidance, de-identification practices, ethico-legal metadata, platform-level norms, and commercialization/publication policies.
The CONP’s governance approach can serve as a blueprint for building a more transparent and responsible future in data sharing and open science.