CONP Ethics and Data Governance Framework

The CONP Ethics and Data Governance Framework has been developed by theCONP Ethics and Governance Committee. This document is currently open for comment until August 17, 2019.For more information or to submit comments, please contact:adrian.thorogood@mcgill.ca Canadian Open Neuroscience Platform, Ethics and Governance Committee: Ann Cavoukian, Privacy by Design Centre of Excellence, Ryerson University John Clarkson, Ontario Brain Institute Jennifer Flynn, Division of Community Health and Humanities, Faculty ofMedicine, Memorial University Richard Gold, Faculty of Law, McGill University Judy Illes, CM, PHD Division of Neurology, Department of Medicine, Universityof British Columbia. Bartha Knoppers, Centre of Genomics and Policy, McGill University (Chair) Roland Nadler, Center for Health Law, Policy & Ethics, University of Ottawa Walter Stewart, Walter Stewart and Associates Adrian Thorogood, Centre of Genomics and Policy, McGill University (Manager) The Ethics and Governance Committee would also like to acknowledge thenumerous members of the CONP and scientific community who havecontributed to this policy. Executive Summary This Framework outlines core ethical elements, general principles, and practical guidance for theneuroscience community in Canada and internationally, as it adopts open science practices anddevelops supporting information and communication technology (ICT) infrastructure, namely theCanadian Open Neuroscience Platform (CONP). Open science involves the rapid and widedistribution of scientific knowledge, in order to improve scientific collaboration, integrity, andreproducibility; accelerate discovery; and improve human health. If conducted responsibly, openscience can foster the human right of everyone to share in scientific advancement and itsbenefits.1This Framework focuses on safeguarding the rights and interests of data subjects inopen science contexts, which include autonomy, privacy, health, and inclusion. It should beinterpreted with reference to the CONP mission.2 1 United Nations, Universal Declaration of Human Rights (1948), art 27. 2 Canadian Open Neuroscience Platform (CONP), “Our Mission” https://conp.ca/