Search

CONP Ethics Toolkit consisting of: Model prospective consent clauses Retrospective consent filter De-identification information and tools This consent toolkit is the product of extended discussions and careful drafting that considers bothCanadianandinternationalethical frameworks and research practice. In adapting this consent toolkit for your own research needs, we encourage you to mention to your research ethics board that your consent materials are modeled after those created by theCONP Ethics and Governance Committee. The Committee's members include internationally recognized experts in research ethics, neuroethics, data governance, and law: Trudo Lemmens (Chair), Alexander Bernier (Manager), Ann Cavoukian, John Clarkson, Jason Karamchandani, Roland Nadler, Dylan Roskams-Edris, and Walter Stewart. Further feedback was graciously provided from members of the CONP community, in particular Patrick Bermudez, Marcel Farrés Franch, Jessica Royer, Robert Zatorre, and past Committee Members Bartha Maria Knoppers, Lindsay Green Noble, and Judy Illes. GitHub source:https://github.com/CONP-PCNO/Ethics_and_Data_Governance

CONP Ethics Toolkit consisting of: Model prospective consent clauses Retrospective consent filter De-identification information and tools This consent toolkit is the product of extended discussions and careful drafting that considers both Canadian and international ethical frameworks and research practice. In adapting this consent toolkit for your own research needs, we encourage you to mention to your research ethics board that your consent materials closely follow the templates created by the CONP Ethics and Governance Committee. The Committee's members include internationally recognized experts in research ethics, neuroethics, data governance, and law. The Committee's members are: Bartha Maria Knoppers (Chair), Michael Beauvais (Manager), Ann Cavoukian, John Clarkson, Lindsay Green-Noble, Judy Illes, Jason Karamchandani, Roland Nadler, Dylan Roskams-Edris, and Walter Stewart. Further feedback was graciously provided from members of the CONP community, in particular Patrick Bermudez, Marcel Farrés Franch, Jessica Royer, and Robert Zatorre. Full Changelog: https://github.com/CONP-PCNO/Ethics_and_Data_Governance/compare/v1.0...v1.0.1

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/