Navigate below to learn more about project PEDIGReE. Review the full study protocol, consent forms and research ethics review certificates from the McGill University IRB.
This PhD thesis will study the relationship between research ethics review policy and data sharing practices for infrastructure science projects involving children in Canada. Little empirical research to date quantifies the resource demands of existing ethics review procedures for pediatric infrastructure research in Canada, nor what impact they have on data sharing and collaboration among researchers in this field. The purpose of this thesis is twofold: 1) to examine the effects of existing ethics review approval mechanisms on the propensity to share research data among principal investigators involved in pediatric genomic projects; and 2) to develop a Canadian policy framework that identifies the ethical, legal, social and scientific priorities necessary for sharing pediatric research data. Taken together, both studies fill a knowledge void at the nexus of applied bioethics and Canadian health policy development for pediatric infrastructure science.
Download and review all relevant consent forms by participant type
Ethics approval certificates from 2016-present by the McGill University Institutional Review Board (IRB)