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.
Close2016 - 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 - 2023
Granting Agency: Genome Alberta - Genome British Columbia - Genome Canada - Ontario Genomics Institute (OGI)
To understand unsolved rare diseases (RDs), C4R-SOLVE explores new sequencing technologies and seeks to improve data sharing world-wide, enabling the discovery of new causes of RDs. The goal of C4R-SOLVE, aligned with Canada’s national RD strategy, is to fully understand the molecular pathogenesis of unsolved RDs and facilitate timely access to clinical genome-wide sequencing. As part of its activities, C4R-SOLVE will develop a pan-Canadian RD repository (Genomics4RD) to optimize data sharing and analysis. P3G2 developed a governance framework to oversee the Genomics4RD database.
This framework outlines the policies with respect to the creation, management, and use of the Genomics4RD repository. It includes, amongst others, provisions on the identification of eligible participants, core consent requirements (prospective/retrospective), terms of the collection and integration of data from different sources (e.g., genomic data, clinical data, cost data, patientcontributed data, etc.), re-contact options and, where relevant, mechanisms for the return of results. Furthermore, an assessment of legacy (retrospective) datasets to be shared with Genomics4RD and PhenomeCentral was undertaken.
Close2020 - 2023
Granting Agency: Canadian Institutes of Health Research (CIHR) - Natural Sciences and Engineering Research Council of Canada (NSERC) - Networks of Centres of Excellence (NCE) - Social Sciences and Humanities Research Council of Canada (SSHRC) - Stem Cell Network (SCN)
The aim of this project is to demonstrate through a clinical trial that autologous epithelium tissue, engineered from corneal limbal stem cells, offers an efficient strategy to treat Canadian patients with visual deficits due to limbal stem cell deficiency. As one of the leading organ reconstruction laboratories in the world, LOEX, CHU de Que?bec-Universite? Laval, will be the first to launch a multicentre trial using a human fibroblast feeder layer (instead of a murine feeder layer) to expand and preserve human stem cells in vitro, thus possibly improving vision for many Canadians. The CGP provides consultation on the socio-ethical and legal issues and assists in developing the necessary documentation for approvals from Health Canada and research ethics boards.
Close2020 - 2022
Granting Agency: Ministère de la Santé et des Services sociaux (MSSS) - Revue Que´be´coise de didactique des mathe´matiques (RQDM)
The Réseau québecois de diagnostic moléculaire (RQDM) is an initiative that aims to meet the current and future needs of the health and social services network in the field of molecular diagnosis and personalized medicine, particularly in the areas of rare disease diagnosis and cancer. It also aims to repatriate analyses performed in private national and international laboratories into the Québec public health and social services network. The CGP works on the development of an ethical and legal framework for the implementation of RQDM’s activities and to harmonize consent for patients that are prescribed a molecular analysis in genetics or oncology. Accordingly, the CGP is developing template consent forms that address the following elements: compliance with ethical standards, management of incidental findings, storage and sharing of sequencing data and clinical information, storage of samples for future clinical use, and access to samples and data resulting from clinical analyses for research purposes.
Close2020 - 2023
Granting Agency: Genome Canada - Génome Québec
This project aims to develop and implement a plan that raises awareness in Healthcare professionals, key opinion leaders, the Canadian public and Funding Agencies about the DOvEEgene screening test that will be made available to the public, initially in the context of a trial and following successful validation as a clinical test. Our milestone is an effective DOvEEgene Awareness Campaign developed on evidence-based strategies. Methods/Tools will be developed after analysing the literature on barriers and promoters that are relevant to implementation of a screening test and taking into account contextual factors, such as the healthcare system itself, providers, and patient groups, as well as economic impact. We will use a variety of television, newspaper, magazines, radio, features & interviews, our website, and social media. We will send an information letter to gynecologists and general practitioners to inform them about the trial using lists obtained from the College Des Me?decins. This will be repeated every six months. We will invest in Continuing Medical Education of Healthcare Professionals (general physicians, gynecologists, nurses) and in lectures and events aimed at middle-age and mature women, who will be the target population.
Close2018 - 2022
Granting Agency: Genome Canada - Génome Québec
Advances in next-generation sequencing have led to a vast increase in available human epigenetic data, including transcriptomic data (via RNA-seq) and chromatin data (via ChIP-seq). These epigenetic datasets have led to the development of expression-wide association studies (EWAS) and chromatin-wide association studies (CWAS). This may lead to improved biomedical applications by providing mechanistic explanations and key insights into the interpretation of genome-wide association studies (GWAS). However, obtaining the raw data stored at multiple controlled access repositories can be a very challenging task, because access needs to be controlled in order to protect research participants’ right to privacy.
We need mechanisms to make the process of analyzing epigenomic data more flexible, while addressing the ethical and privacy aspects of data sharing. The Global Alliance for Genomics and Health (GA4GH) has developed tools and standards to address these issues for genomic data. Such tools are now also needed for epigenomic data. The EpiShare framework will provide a user-friendly web resource for scientists to access and visualize large epigenomics datasets, alongside privacy and confidentiality assessment tools to ensure that the methods with which the data will be stored, accessed and analyzed meets requirements set by international laws and standards.
Close2020 - 2023
Granting Agency: Canadian Institutes of Health Research (CIHR) - Natural Sciences and Engineering Research Council of Canada (NSERC) - Networks of Centres of Excellence (NCE) - Social Sciences and Humanities Research Council of Canada (SSHRC) - Stem Cell Network (SCN)
This study examines the ethical and legal issues regarding the use of internet-based Direct-to- Participant (DTP) recruitment and provides guidance for its practice in stem cell research. The main objective of this project is to fill the ethical and policy gap by: 1) examining the ethical/legal issues of international DTP recruitment (for adult and minor participants) and 2) yielding concrete, practical ethical guidance and tools for Canadian researchers and REBs. In collaboration with the Program for Individualized Cystic Fibrosis Therapy (CFIT) at SickKids, the CGP will first build a case study to examine the feasibility and utility of international DTP recruitment, while producing practical, context specific governance framework and recruitment tools. Knowledge and pragmatic experience gained from the CFIT case study, along with consultations with national stakeholders (REB representatives, researchers, and policy makers), will contribute to the development of Canadian Best Practice Guidelines for DTP recruitment. As innovative and fundamental resources for Canadian REBs and researchers, the guidelines and practical tools will directly address an immediate need for clear policy and guidance for international DTP recruitment in stem cell research. They will also set the standards for Canada and internationally, consolidating Canada’s position as a leader in policy development.
Close2020 - 2023
Granting Agency: Canadian Institutes of Health Research (CIHR) - The Government of Canada Public Health Agency of Canada (PHAC)
The COVID-19 Immunity Task Force (CITF) is collecting blood samples and survey data for the purposes of assembling a national repository of data relating to seroprevalence and immunization, as well as vaccine surveillance. The CITF is coordinating numerous local and multi-centre seroprevalence studies, and is collaborating with Canadian Blood Services, He?ma-Que?bec, and the National Microbiology Laboratory, among other partners, to collect and interpret data in a harmonized manner.
The CGP is responsible for creating ethico-legal deliverables for the CITF and for guiding the data governance initiatives thereof.
To this end, the CGP has produced a data governance framework, template informed consent materials, and retrospective consent guidance for legacy datasets and samples. Further, the CGP has been actively involved in the CITF’s efforts to ensure the normative interoperability of its cohorts, through direct engagement with study coordinators and CITF leadership.
Close2019 - 2022
Granting Agency: Canadian Institutes of Health Research (CIHR) - Fonds de recherche du Québec - Santé (FRQS)
EUCanCan aims to federate existing European and Canadian infrastructures to analyze and manage genomic oncology data. The CGP is co-leading the development of guidance and ethico- legal tools regarding international sharing of clinical and research oncology data. The aims include: 1) to perform a legal, policy, and normative interoperability analysis to develop guidance aimed at Canadian oncology projects when sharing personal health data with European countries and within Canada; 2) to analyze the requirements Canadian projects will have to satisfy pursuant to the EU General Data Protection Regulation when receiving personal health data from European partners; 3) to deliver a Report these first two topics; 4) develop overarching guidance for the project on the use and sharing of clinical cancer-related genomic and other health related data; and 5) describe generalized compliance tools to be used by future international collaborations, whether they are studying cancer or other diseases. Thus far, the CGP has compiled guidance and research related to the pan-Canadian and Canada-EU sharing of data. The CGP intends to produce further research and guidance relating to the use of centralised platforms to store health data across Canada and the European Union.
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.
Close2021 - 2022
Granting Agency: Canadian Institutes of Health Research (CIHR)
The COVID-19 outbreak has highlighted the need for genomic data standards to share high- quality genomic and health data rapidly. Researchers have started to share viral and host sequence data at an unprecedented pace, a first step in creating vaccines in record time. Sharing this data is necessary to understand human diseases and eventually help patients. Doing so requires the community to agree on standard methods for collecting, storing, transferring, accessing, and analyzing data.
The Global Alliance for Genomics and Health (GA4GH) GA4GH brings together 1,000+ individual contributors and 660+ organizational members across 35+ countries to accelerate progress in genomic research and human health by cultivating a common framework of standards and harmonized approaches for effective and responsible data sharing.
GA4GH will develop, refine, and adapt GA4GH standards and open-source tools to facilitate research data sharing for COVID applications and the greater infection disease community. This project will support the GA4GH to bring in additional personnel, support the existing team, and drive engagement with the Canadian COVID research community. Collectively, these efforts will ensure the rapid and timely research response to the current phase of the COVID-19 pandemic in Canada and around the globe, which emerging variants of concern will heavily impact.
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 hosts the HCA ethics policy platform and assists the HCA in the ongoing coordination of its Ethics Working Group (EWG), the development of an ethics and data governance framework, template consent forms, relevant tools (retrospective consent filter, ethics submission guidance), template agreements (material/data transfer agreement templates, data submission agreement template, data use agreement template) and a helpdesk to support the HCA community. The CGP is also in the process of producing specialized guidance relating to holistic international data governance and to pediatric populations and other vulnerable groups.
Close2020 - 2022
Granting Agency: Fonds de recherche du Québec - Santé (FRQS)
The CHU de Que?bec-Universite? Laval has developed a “collaborative oncogenetic model” (COM) aimed at improving access to genetic counseling services and minimizing delays for genetic tests for patients. The Oncopole project seeks to understand the context in which the COM was devel- oped and implemented, and to document the lessons that can be drawn from it to optimize the delivery of local and regional oncogenetics services in Quebec.
CGP missions:
- Review of the literature on legal, regulatory and ethical issues related to the extension of the role of non-genetic health professionals and the establishment of a register of patients benefiting from genetic counseling and testing for cancer hereditary breast and ovary.
- Comparative law analysis to identify the main legal variations and promote better coordination of the legal texts of the different national systems.
2018 - 2023
Granting Agency: Genome Canada - Génome Québec
Acute myeloid leukemia (AML) is a leading cause of cancer-related death in young adults and a highly lethal disease in older adults. The Leucegene project aims to contribute to the more effective targeting of AML treatment according to genomics risk profiles, especially in the case of patients in intermediate risk categories for whom no reliable curative treatment measures exist. Alongside its genetics research objectives, the Leucegene project team will also assemble a ground-breaking web portal that will make the project’s findings widely available to researchers, clinicians, and patients. The CGP undertook an extensive review of policy instruments adopted for similar functions as well as significant engagement with patients, caregivers, and healthcare providers. Notably, in-depth interviews were conducted with healthcare providers to assess their expectations for using a web portal for accessing and sharing information about AML research, which, in turn, informed the development of the portal. These efforts will also contribute to the drafting of internal policy guidance for managing the Leucegene portal. At the same time, the CGP will draw on international policy and case law to produce a Good Practices document for informing the development of prognostic and therapeutic web portals in other healthcare contexts. The center will also organize several focus groups with patients to better understand their expectations in terms of online services to access health information and help the leucegene webportal to be more user-friendly.
Close2019 - 2023
Granting Agency: ONCOPOL
The goal of this project is to create a dynamic, leading North American centre for oncology research and innovation. Formed by the Goodman Cancer Research Centre, the Jewish General Hospital, the Centre hospitalier de l’Universite? de Montre?al (CHUM), the Maisonneuve-Rosemont Hospital, the Institute for Research in Immunology and Cancer (IRIC) and the Research Institute of the McGill University Health Centre (RI-MUHC), the consortium’s mission to double enrollment in oncology clinical trials and to create a dynamic biobank of samples collected during clinical trials of new drugs will have a major impact on the advancement of science for the benefit of patients. The team at the CGP will assist in the development of project governance tools and will advise the consortium on its legal and ethical obligations. In doing so, the Centre will draw on its extensive expertise in the biobanking field. The team will likewise draw on its background in the adoption of mobile health technologies for facilitating largescale genomic oncology research.
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.
Close2019 - 2023
Granting Agency: Fonds de recherche du Québec - Santé (FRQS)
In partnership with numerous universities and colleges, and with the support of 88 research centres, non-governmental organizations, businesses, government players and various groups in Quebec, Canada and abroad, Université Laval proposes to set up the International Observatory on the Societal Impacts of Artificial Intelligence and Digital Technologies (OBVIA). The ambition of this innovative institution is to distinguish itself internationally through the quality of its research, its ability to federate various types of expertise and its ability to foster collaboration among all parties concerned by the challenges posed by the development of artificial intelligence (AI) and digital technology. OBVIA is based on four different but interdependent functions. It will conduct intersectoral and interdisciplinary research and creative activities on several priority themes. Members from the CGP will be involved in the “Éthique, gouvernance, démocratie et responsabilité sociale des organisations” Pillar within OBVIA.
Close2018 - 2023
Granting Agency: Terry Fox Research Institute
The PRecision Oncology For Young peopLE (PROFYLE) program aims to transform cancer treatment in children, adolescents, and young adults by using next-generation molecular tools and cancer model systems to identify disease and patient-specific biomarkers. The project emphasizes real-time molecular profiling to personalize cancer treatment and improve outcomes. The CGP studies questions surrounding access to genetic data by parents and the use of mobile health applications when streamlining recruitment processes. Our team proposes policy recommendations for improving access to molecular profiling and associated treatment applications. The team will further identify ethical and legal issues raised by the development of mobile health technologies that facilitate patient recruitment and that promote equitable access to molecular profiling. This research will lead to the development of a points to consider document to guide PROFYLE’s work toward developing a mobile application.
Close2020 - 2023
Granting Agency: Canadian Institutes of Health Research (CIHR) - Natural Sciences and Engineering Research Council of Canada (NSERC) - Networks of Centres of Excellence (NCE) - Social Sciences and Humanities Research Council of Canada (SSHRC) - Stem Cell Network (SCN)
Treatment for burn wounds is based on skin autografts, but when the surface that needs to be covered is more than 50 percent of one’s total body surface area, autografts becomes strategic. With tissue engineering methods developed in Dr. Moulin’s lab (Universite? Laval) , autologous Self-Assembly Skin Substitutes (SASS) can be produced from only a small skin biopsy and could permanently cover all the patient wounds. This early phase clinical trial has now been accepted by Health Canada and few patients have been treated in Que?bec. This project will allow expanding the trial to burn units in other Canadian provinces. The aim of this trial is to evaluate this novel therapeutic approach, treating 17 patients to help skin regeneration. Dr. Moulin plans to recruit at least seven patients during the next two years and evaluate graft take and post-grafting scarring over a two-to-three-year period. Her aim is to treat most Canadian patients that have been burns over more than 50 percent of their body. SASS treatment should have economic and social benefits, as our preliminary results have demonstrated that treatment decreases morbidity caused by standard treatments and increases quality of life for patients. At the end of the clinical trial and acceptance by Health Canada, Dr. Moulin’s lab will be the first in Canada to routinely treat patients with autologous reconstructed skin.
Our interdisciplinary team is composed of four internationally known researchers in regenerative medicine from two universities and of plastic surgeons working in major Canadian burn unit sites. The CGP (CGP) will assist in preparing the necessary requirements for research ethics approval (including preparing standardized recruitment procedures and protocols, consent forms and information pamphlets). This will require coordination of REB approval. The CGP will also be involved preparing documentation for the pre-CTA meetings and for regulatory approval with Health Canada.
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.
Close2019 - 2023
Granting Agency: Canadian Foundation for Innovation (CFI)
The Cancer Genome Collaboratory (CGC) is a unique Canadian cloud compute facility that holds the world’s most comprehensive public collection of cancer genomes and associated clinical information. The proposed work will extend the CGC’s data holdings, improve accessibility to the data, add a series of high-quality vetted pipelines for standardized cancer genomic analysis, and implement services that apply new cutting-edge algorithms for the interpretation of cancer genomes. The CGP is drafting a code of practice for the international sharing of cancer genomic data. The CGP has also performed research concerning data identifiability standards, data protection law, and international data transfers with a particular emphasis on data transfers between Canada and the European Union.
Close2019 - 2022
Granting Agency: Jewish General Hospital Foundation
The McGill Clinical Genomics program (McG) aims to implement hospital-based genomic medicine building on robust research to improve clinical care. McG seeks to improve disease diagnosis and risk-stratification, the efficiency of test ordering and prediction of drug responses that will deliver benefits to person-centered patient care and value to the wider healthcare system and across the CIUSSS du Centre-Ouest-de-l’I?le-de-Montre?al/Center West Montreal. As part of this project, members of the Centre of Genomics and Policy will lead the Ethics and Governance Pillar and develop a set of ethics policies and templates to ensure that the Project will be able to recruit participants as well as use and share their data and samples for research purposes in an ethical and efficient manner, which complies with international best practice. Special focus will be put on COVID-19 related recruitment in light of the pandemic.
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.
Close2018 - 2023
Granting Agency: Social Sciences and Humanities Research Council of Canada (SSHRC)
About 1.7% of the population falls under the umbrella of “intersex”, with bodies that develop along a spectrum of sex differences. Intersex individuals face egregious human rights violations, discrimination, and stigmatization. In healthcare, this includes unnecessary surgical interventions, the withholding of accurate health information, and an overemphasis of incidental health risks. Qualitative research on which best practices and policies can be based, and which would make it possible to put an end to these prejudices, remains underdeveloped. At present, there is a lack of Canadian-specific guidance or explicit legal protections to guide healthcare providers in their professional relationship with intersex patients. This project engages two communities of stakeholders: intersex individuals and healthcare professionals (HCPs). The core objectives are to generate qualitative evidence on the experiences of intersex individuals in the healthcare system, and to use this evidence to develop improved standards of care. Following a comparative review of relevant laws and policies, we will conduct a series of semi-structured interviews with intersex adults and their HCPs. From these, the CGP will develop: 1) a guidance document for healthcare practitioners; 2) an issues paper on person-centered research with vulnerable populations; and 3) information sheets for intersex individuals navigating the Canadian healthcare system.
Close2020 - 2023
Granting Agency: Canadian Institutes of Health Research (CIHR) - Natural Sciences and Engineering Research Council of Canada (NSERC) - Social Sciences and Humanities Research Council of Canada (SSHRC) - Stem Cell Network (SCN) - Université Laval Networks of Centres of Excellence (NCE)
The aim of this project is to demonstrate through a clinical trial that autologous tissue-engineered skin substitute, produced with fibroblasts and epithelial stem cells previously corrected ex vivo by gene therapy, offers an efficient strategy to treat Canadian patients suffering from dystrophic epidermolysis bullosa (DEB). As one of the leading organ reconstruction laboratories in the world, LOEX, CHU de Que?bec-Universite? Laval will be the first to launch a clinical trial using a bilayered human skin substitute (instead of a single cell type) in which the adhesion of epidermis to the dermis is functional in vitro before grafting on patients, thus possibly providing a curative treatment for the recurring wounds of many Canadians. The CGP (CGP) will assists in preparing the necessary requirements for research ethics approval (including preparing standardized recruitment procedures and protocols, consent forms and information pamphlets). The CGP will also be involved preparing documentation for the pre-CTA meetings and for the regulatory approval with Health Canada.
Close2020 - 2023
Granting Agency: Fonds de recherche du Québec (FRQ)
This project aims to create a platform to revolutionize the treatment of heart disease. The project will establish a scientific basis for a nano-vaccine intended to reduce the need for medication that prevents cardiovascular events. It will simultaneously assess the ethical and legal complications raised by the development of such technology. The team at the CGP is engaged in studying the ethical and legal implications of shifting from personalized therapy (medication) to universal therapy (vaccine). Among other things, the team will determine whether the predicted transition will affect the legal responsibilities of health professionals. We focus in particular on the obligations of health professionals engaged in the care of minors and asymptomatic populations.
Close2020 - 2023
Granting Agency:
This study aims to explore the potential ethical, legal and social implications (ELSI) associated with the use of artificial intelligence (AI) within WADA’s anti-doping strategies. This will be accomplished using a three-round, consensus-building online survey method (Delphi study) whereby the perspectives of experts and stakeholders with varied expertise and experiences will converge to inform a forward-looking approach for the ethical application, regulation and design of AI within a sport anti-doping context. These include (but are not limited to): anti-doping organization administrators; anti-doping laboratory administrators; bioinformatics experts with knowledge about AI; ELSI scholars (e.g., ethicists, social scientists, legal scholars) working on AI and/or anti-doping; and advocates of elite athletes’ rights and interests.
Ultimately, this will assist in better informing and facilitating the translation of the relevant ELSI into normative guidance (i.e., ethical principles and legal norms), as well as shape regulatory and governance approaches in the applications of AI within anti-doping strategies. This will foster coherence and provide overarching ethical guidance to effectively navigate and address the issues and challenges identified.
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