CONP Citizen Science Consent Tool

The CONP Citizen Science Consent Tool is the informed-consent instrument through which members of the public contribute their own neuroscience data to the Canadian Open Neuroscience Platform (CONP) for open sharing through the CONP Portal. It explains the CONP's open-science mission and Community Server, broad consent for future research use, the contributor's responsibility for de-identification, open data sharing, withdrawal, commercialization, benefits, risks and the return of research results. It ends with a plain-language summary and a signature block.

The tool sets out the conditions under which the CONP becomes the custodian of data that already exist, without using them for research. It is not a research consent form: it is not used to collect data or to conduct research, and it was not submitted to a research ethics board.

Version 1.0.1 was used by participants in the Courtois NeuroMod (CNeuroMod) project to share their own brain-imaging data openly through the CONP. The tool is published so that other groups can cite, reuse and adapt it. It draws on the CONP Ethics Toolkit, including the CONP Consent Guide and the CONP Privacy and De-Identification Guide.

The tool was prepared by the CONP Ethics & Data Governance Committee and this Project has been made possible with the financial support of the Canada Brain Research Fund (CBRF), an innovative arrangement between the Government of Canada (through Health Canada) and Brain Canada Foundation, and McGill University. The views expressed herein do not necessarily represent the views of the Minister of Health or the Government of Canada.