Current Research Projects
2021 - 2025
Granting Agency: Canadian Foundation for Innovation (CFI)
Rapid advances in stem cell research and tissue engineering have put regenerative medicine at the forefront of innovation in the area of patient-oriented therapeutic applications. Combining stem cells cultured from patient biopsies with tissue engineering has the potential to revolutionize grafting practices by offering viable and feasible solutions not only to healing complex wounds but also to the shortage of donated organs. However, the clinical translation, from bench to bedside, of these personalized tissue engineering products is slow and often hampered by both a lack of resources and access to appropriate facilities that meet the safety and quality standards required for clinical research. Therefore, the aim of this project is to provide Canada with the certified Good Manufacturing Practice (cGMP) facility required to conduct the clinical research essential in concretizing the applications of personalized tissue engineering for regenerative medicine.
Close2019 - 2024
Granting Agency: Genome Canada - Génome Québec
With rare diseases (RD), sufficient patient numbers are not available at any one site. Data needs to be centralized, integrated and broadly accessible to drive RD research for gene identification and understanding. Harmonized policies, an overarching governance framework and the sharing of data through a nation-wide data sharing resource would make a significant impact on research and treatment of RDs. The Canadian Genomics Partnership for Rare Diseases (CGP4-RD) Policy Toolkit aims to address disparities between current institutional, provincial and federal regulatory frameworks to foster sharing of research and health data. Building from a stakeholder engagement process, a set of broad, inclusive and actionable policy resources are being developed for implementation by Genome Canada funded Genomic Applications Partnerships Program (GAPP) projects. This policy toolkit also aims to enable pan-Canadian data sharing by projects funded by the Genome Canada GAPP initiative that would incorporate the data sharing principles and practices as well as the protection of patient interests particular to rare diseases. Though tailored to the rare disease clinical research community, the tools developed by the CGP4- RD Policy Toolkit can be adapted and used as models for common diseases as we move towards precision medicine.
Close2019 - 2023
Granting Agency: Canadian Institutes of Health Research (CIHR) - Génome Québec
The Global Alliance for Genomics and Health (GA4GH) is an international consortium that frames policy and establishes standards for the international exchange of genomic and health related data. Data sharing between institutions, sectors and countries is essential for accelerating research, ensuring databases are ethnically diverse, and improving health care. To guide effective and responsible data sharing, the GA4GH formed a foundational Regulatory and Ethics Work Stream (REWS). “CanSHARE Connect” will support the continued Canadian leadership and coordination of the REWS by the CGP. A central responsibility of the REWS is to develop a forward? looking policy “tool?kit” addressing ethical and legal issues consistent with the Framework for the Responsible Sharing Genomic and Health-Related Data that is developed inn 2017. This tool?kit addresses consent, privacy & security, accountability, and coordinated ethics review of international collaborative research. The tool?kit must continue to expand and evolve in order to address the changing needs of open science as well as shifting legal and ethical requirements. The goal is to promote harmonization of policies and protections across countries and settings, to improve certainty and foster the trust that data sharing protects the rights and interests of participants, researchers, and society. The REWS also supports the implementation of the tool?kit by 22 real world genomic data sharing “Driver Projects”.
Close2018 - 2025
Granting Agency: Canadian Institutes of Health Research (CIHR) - Fonds de recherche du Québec - Santé (FRQS)
H2020 euCanSHare aims to build the first one-stop-shop platform for multi-cohort cardiac data integration and exploitation, integrating within a unified ecosystem metadata catalogues, computational tools and data models for facilitating data sharing and re-use in cardiovascular research. Through this consortium, the platform will build upon existing collaborative initiatives on both sides of the Atlantic, namely the Canadian Alliance for Healthy Hearts and Minds (8 cohorts), the European BiomarCare project (>30 cohorts), and other large cohorts such as the UK Biobank (500,000 participants). Addressing their current limitations and exploiting the accumulated know-how and experience, euCanSHare will provide new possibilities for personalised medicine research in the field of cardiology. As the leaders of WP1 (Socioethical and legal interoperability analysis) (and in collaboration with P. Borry (KU Leuven)), P3G2 coordinates the ELSI research activities regarding the legal and ethical implications of implementing blockchain technology, and associated smart contracts, in a Canadian-European data sharing context. The Centre of Genomics and Policy has contributed to this initiative by translating patient consents into automatable profiles for machine reading and providing guidance on Canadian privacy law and research ethics.
Close2018 - 2023
Granting Agency: The Chan Zuckerberg Initiative - The Klarman Family Foundation - The Leona M. and Harry B. Helmsley Charitable Trust
The Human Cell Atlas (HCA) is a global biomedical research collaboration to create a reference map of all human cells – an international, public resource for better understanding human health and disease. The HCA’s success relies on the expertise of researchers across several countries, undertaking work in different research domains and settings. The CGP leads the development of its ethics tools, including an ethics and data governance framework, template consent forms for adult and pediatric populations, relevant tools (retrospective consent filter, ethics submission guidance), template agreements (material/data transfer agreement templates, data submission agreement template, data use agreement template). The CGP further coordinates the HCA Ethics Working Group (EWG), and hosts an ethics helpdesk to support the HCA community. The CGP supports the governance activities of the HCA’s Data Coordination Platform (DCP), including the implementation of its Data Access Compliance Office (DACO) and Data Access Committee (DAC).
Close2018 - 2025
Granting Agency: Autism Speaks Inc.
MSSNG and AGRE are the world’s largest databases of genomic information collected from individuals with autism spectrum disorder (ASD) and their families. MSSNG in particular advances the goal of sequencing 10,000 families affected by ASD to answer significant remaining questions about autism, its causes, and effects. Scientists from around the world may access trillions of data points in a single database. The CGP hosts the Data Access Committee for MSSNG and AGRE, adjudicating access on the part of external researchers to these valuable resources. CGP manages the review of data access applications and grants access to qualified researchers. In 2021, the Data Access Committee approved 17 new applications.
Close2017 - 2024
Granting Agency: Canadian Institutes of Health Research (CIHR)
To join global efforts, the International Human Epigenome Consortium (IHEC) has established an Epigenome Mapping Centre (EMC) at McGill University that applies epigenome mapping in order to understand interactions between environment and genome in human blood cells, interprets diseases impacting metabolism using tissue samples, and studies how epigenetic changes can alter function of the brain. The large-scale generation and sharing of human epigenome data present challenges to the informed consent process that are managed first through the integration of existing cohort data with EMC McGill, using a special template developed in conjunction with the Public Project in Genomics and Society (P3G), and subsequently by prospectively developing a model consent template that ensures all IHEC consent, policy, and ethics requirements are met. Throughout this, we will continue to actively participate in discussions on the development of a more comprehensive ethical policy framework at the IHEC level. Both the EMC and Epigenomic Data Coordination Centre (EDCC) projects also involve the development of and support for a bioethics workgroup for the IHEC.
Close2016 - 2024
Granting Agency: Canadian Institutes of Health Research (CIHR) - The National Natural Science Foundation of China (NSFC)
The epidemics of obesity and metabolic syndrome related disorders are a major public health concern. Increasing evidence points to the role of early life adverse factors in the developmental origins of the vulnerability to such metabolic disorders. Reducing the risk of overweight and obesity (OWO) from early life stages will produce substantial benefits to decrease population burdens of metabolic diseases. However, current intervention measures remain insufficient to halt the increasing OWO epidemics. Building on large birth cohort studies, clinical trials and studies on the development of metabolic disorders, our transdisciplinary Chinese-Canadian team will conduct a multi-site and community-based randomized controlled trial. This trial will test the effect of a family-mother-child intervention package (incorporated into routine patient care) on childhood OWO rates in children aged one through six. The CGP is developing the policies and tools to facilitate the use of the cohorts included in this project. More specifically, the CGP develops the governance framework as well as the data access and biospecimen sharing policy. The tools created by the CGP aim to facilitate policy interoperability and access authorizations as well as streamline the ethical and legal aspects of international collaborative research.
Close2021 - 2023
Granting Agency: Fonds de recherche du Québec (FRQ)
Smartphone applications for health are being increasingly used as a platform to collect and share large volumes of crowdsourced personal health data for biomedical research and algorithm training. Consumer genetics products are similarly allowing individuals to have direct access to their own genetic data and to share such data with researchers. Using smartphone and genetic data in these ways presents numerous opportunities to expand biomedical knowledge, though it also raises certain risks. Some of these include risks to personal privacy and risks associated with unclear ethical and legal obligations on the part of app developers and researchers. In this project, the CGP collaborates with Belgian partners to mitigate these risks. We do so by determining how smartphone applications and other mobile tools that collect health data work in practice and by addressing legal, ethical, and regulatory uncertainty in both Canada and the European Union. We will use this evidence to develop health policy guidelines that will enable smartphone data to be used safely, in a manner that protects users and the public. In doing so, we will assure that such data will contribute to improved health outcomes by expanding biomedical knowledge and making health more effective and efficient.
Close2020 - 2023
Granting Agency: Qatar National Research Fund - Sidra Medicine
This project aims at creating a knowledge-based platform and electronic medical record (EMR) that will integrate clinical and genomic information into clinically actionable reports for clinicians. Such platform will be flexible and adaptable to different biomarkers independently of their “omics” origin. The CGP will work to develop privacy and confidentiality policies to facilitate this integration of genomic and clinical data. Ultimately, this work will culminate in best-practice documents that will be shared with the Qatar team for local and territorial use.
Close2021 - 2024
Granting Agency: Ministère de l'Économie et de l’Innovation (MEI)
The Quebec SmartCare (Soins intelligents) Consortium is an innovative research project centred on the Opal patient portal (opalmedapps.com) at the Research Institute of the McGill University Health Centre (RI-MUHC) that is designed to address the challenges caused by the siloing of data in the Quebec healthcare system. It comprises a unique group of public and private partners with expertise and interest in patient-centered care, mHealth technology, and AI research. Working together, the consortium partners will strengthen the patient-centered technology of the existing Opal patient portal, enable secure data flow from wearable devices into Quebec hospitals, and collect real-world data for artificial intelligence and real-world evidence research.
The Centre for Genomics and Policy will: (1) examine specific ethico-legal issues associated with access to data, (2) develop a governance framework for access, (3) develop with stakeholders a “Collaboration with Industry” policy, a Code for Collaboration with Industry, and a go/no-go checklist for agreements with industry, and (4) implement an Access system and coordinate review/adjudication of access requests by researchers.
The work will put in place solid frameworks for data governance and commercialization/ technology transfer that are expected to persist well beyond the lifetime of the QSCC and will help foster continued collaboration amongst the partners.
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