Current Research Projects
2015 - 2020
Granting Agency: Genome Canada - Génome Québec
Each year, there are an estimated 88,000 cases of foodborne illnesses related to the consumption of fresh produce contaminated with Salmonella. The health impacts vary, from minor effects to serious infection requiring medical care or even causing death. Salmonella infection is estimated to cost the Canadian economy as much as $1 billion annually in terms of medical costs, work absenteeism, and economic losses. Using whole genome sequencing, the research team will develop new tools that will: (1) allow public health officials to better determine the source and treatment of Salmonella illnesses; (2) enable stakeholders along the food supply chain to more rapidly identify and remove contaminated fresh produce from grocery stores and restaurants; and, (3) control the presence of Salmonella on fresh produce. An anticipatory governance approach integrates a consideration of the evidentiary requirements, the economic, legal, ethical, and regulatory implications of supporting such a paradigm shift. More precisely, the CGP team will assess the perspectives of key stakeholders regarding the development, adoption and implementation of the subtyping testing method and the biocontrol. This includes integrating the perspectives of experts (Delphi survey), the general public (national public opinion survey), and a series of interviews with key stakeholders.
Close2016 - 2021
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.
Close2016 - 2021
Granting Agency: Canadian Foundation for Innovation (CFI)
The Distributed Infrastructure for Genomics Data Sharing and Analysis project is divided into four activities. In Activity 1, the CGP will develop a broad Canadian data sharing framework, using the APIs developed under the auspices of the Global Alliance for Genomics and Health (GA4GH). Activity 2 continues the development of GenAP: a computational gateway for data analysis in life sciences that is configured to take advantage of Compute Canada infrastructure. Activity 3 builds a data-sharing platform to allow for the collection of standardized clinical data, dynamic cohorts, and the performance of genome analytics across datasets stored on various Compute Canada nodes, and so as to enable genome-guided clinical trials across Canada. Finally, Activity 4 will establish the Canadian Molecular Profiling in Cancer Trials (CAMPACT) Interchange. Together, the four activities will utilize Compute Canada infrastructure to build a distributed and secure computational framework for the analysis of genomic datasets relevant to human diseases and beyond. The Centre of Genomics and Policy will also contribute to the implementation of the data sharing and privacy policy framework of the International Human Epigenome Consortium (IHEC) as well as that of the GA4GH.
Close2019 - 2022
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 - 2022
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.
Close2018 - 2021
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.
Close2019 - 2023
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 analye and manage genomic oncology data. Each member projects, in Amsterdam, Barcelona, Berlin, Heidelberg, Paris and Toronto, has established a strong genomic oncology research and clinical program. EUCanCan will provide oncology researchers with a uniform computing environment to securely share and analyze harmonized cancer genome and phenome data in the context of clinical research. The CGP is co-leading the development of guidance and ethico-legal tools regarding international sharing of clinical and research oncology data. The aims are to (1) perform a legal, policy, and literature review to develop guidance aimed at Canadian oncology projects when sharing personal health data with European countries and within Canada, (2) 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) delivering a Report these first two topics, (4) developing 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.
Close2018 - 2022
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 - 2022
Granting Agency: Genome British Columbia - Genome Canada - Génome Québec
Genome-wide sequencing (GWS; whole genome or exome sequencing) is a powerful new tool that analyzes a person’s entire genetic make-up. However, the information garnered from this type of testing can be overwhelming and may be misinterpreted by non-experts. Genetic counsellors are health professionals that aid patients and families in making informed decisions for this type of testing. However, due to the small number of genetic counsellors in Canada and lack of legal recognition, access to their services is extremely limited. As access to GWS improves and cost decreases, the use of this technology will increase along with the need for genetic counselling. As a result, further exploration of the possible legal recognition of genetic counsellors and key related strategies is necessary. The CGP oversees policy development for the future legal recognition of genetic counsellors in Canada. Specifically, the CGP will (1) research models of legal recognition available to genetic counsellors; (2) categorize the main tasks performed by genetic counsellors and assess how they translate into legal duties; and (3) convene a pan-Canadian working group comprised of key stakeholders to discuss the feasibility of and potential pathways toward legal recognition.
Close2018 - 2021
Granting Agency: Qatar National Research Fund
As genomic medicine and personalized healthcare become increasingly prevalent in the Gulf region, the public and policymakers face difficult ethical questions. Since 2003, there has been a great deal of institutional emphasis on developing genomic medicine and personalized healthcare in the Gulf. As healthcare systems increasingly emphasize these emerging fields, the public should be exposed both to the science of genomic medicine and to associated issues in Islamic ethics. The latter, being a crucial element of the public’s ‘moral world,’ underscores how ethics and policy norms may be developed for the regulation of genomics practices within the Islamic tradition.
There has been little scholarly or public debate on the implications of genetics on Islamic ethics. To address these gaps, this project attempts to develop an understanding of public engagement for the development of policies and regulations in the genomics and personalized medicine contexts that is both religiously and culturally sensitive. As a long-term objective, the project aims to lay the foundation for a Qatar-based consortium of experts and specialists interested in fostering public understanding and engagement with science. This project’s research team will be composed of experts in such fields as Islamic ethics, genomics, international bioethics, medical social sciences, translation, and interdisciplinary and intercultural communication. The Centre of Genomics and Policy will perform a comparative analysis of international genomics norms that will provide the team with international perspectives they can emulate.
Close2018 - 2022
Granting Agency: Canadian Institutes of Health Research (CIHR)
The HeLTI program was developed by the Canadian Institutes of Health Research (CIHR), Institute of Human Development, Child and Youth Health. The program represents a partnership between CIHR, the South African MRC, the Department of Biotechnology, India, the National Natural Science Foundation of China and the World Health Organization. HeLTI was developed to address the increasing burden of non-communicable diseases (including obesity, diabetes, cardiovascular disease and poor mental health) around the world. There are four separate but harmonized projects that are commencing in Soweto (South Africa), Mysore (India), Shanghai (China), and across Canada. All projects are focused towards developing evidence-based interventions that span from pre-conception across pregnancy and into the postnatal period with a goal improving maternal, infant and child health. The CGP is involved in the development of governance tools to foster international data sharing.
Close2016 - 2021
Granting Agency: Canadian Institutes of Health Research (CIHR)
The precocious and chronic course of depression makes it the disease with the leading cause of disability, an effect marked by a 2-fold difference in the rate for girls and women as of early adolescence. Precise knowledge of how risk factors interact to predict those at higher risk is lacking. For instance, gender differences in stress response are well documented in early emotional development, but not in later development. Genetic differences in susceptibility to prenatal events are also important. The project gives the opportunity to collaborate in four prolific international longitudinal cohorts to communicate, share and reproduce models and findings about early factors in the prediction of early-age psychopathology. The cohorts in Canada, the U.K., the Netherlands and Singapore include and share measures of genes, maternal care, child psychopathology, and sensitive data with different consent forms, measures, access approaches, laws and regulations. The CGP acts as a collaborator-consultant, supporting the project with analysis, reflections and recommendations that pertain to the ethics and legality of: 1. Safeguarding child genomic data, 2. Sharing data across four national jurisdictions, 3. Maintaining standards of international REB’s, and 4. Addressing issues of consent and the need to re-contact child participants once they become adults.
Close2018 - 2020
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.
Close2018 - 2022
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. Most AML patients survive fewer than two years after diagnosis, due primarily to an absence of effective treatment options and an inability to target therapies to genomic risk profiles. 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 prognostic and therapeutic web portal that will make the project’s findings widely available to researchers, clinicians, and patients. The CGP will undertake an extensive review of policy instruments adopted for similar functions as well as significant engagement with patients, caregivers, and healthcare providers. These efforts will 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.
Close2019 - 2021
Granting Agency: ONCOPOL
Our goal is to create one of the most dynamic North American centres for oncology research and innovation. Based on alliances established between six of the largest oncology hospitals and research centres at McGill University and Université de Montréal, the Quebec Cancer Consortium (QCCC) will be one of the most important oncology innovation poles in North America. Collectively, the CQC will harness the power of databases of more than 16,000 cancer patients each year. The consortium will leverage investments from the Terry Fox Research Institute and several pharmaceutical partners, and will integrate unique oncology platforms, advanced clinical trials, the Rossy Cancer Network, the FRQS-Cancer Network, Oncopole, as well as the Exactis Innovations and C3i National Centres of Excellence, in order to innovate in the implementation and sustainability of precision medicine for the treatment of cancer patients in the Quebec health system. The CGP will be involved in the development of governance tools for the project.
Close2018 - 2022
Granting Agency: Genome Canada - Génome Québec
The McGill University and Génome Québec Innovation Centre is a world class research facility for genomics and proteomics. Founded in 2002, the Centre has developed a world-renowned expertise in complex genetic disorders such as cardiac disease, asthma and Type 2 diabetes, and has become a resource and a networking site for various research initiatives in human health, forestry, infectious diseases, agriculture and environment.
Ambitious projects in recent years are a testimony of the ability of Génome Québec to provide data of exceptional quality in the pursuit of various genomics studies. The Innovation Centre provides complete DNA and RNA analysis services, from a few samples to several tens of thousands per week. Large-scale genomics and proteomics services at the Innovation Centre are articulated around sequencing (including massively parallel sequencing), genotyping, functional genomics and extraction supported by a solid infrastructure, tools (Nanuq), unique expertise in bioinformatics and nucleic acid extraction. The Innovation Center also hosts the Canadian Center for Computational Genomics (C3G) which offers bioinformatics services. All services work in parallel to provide comprehensive, reliable services to the Québec, Canadian and international scientific community. Located on the campus of McGill University in the heart of Montreal, the Innovation Centre acts as a vast resource of knowledge and technology to the academic and industrial sectors. The CGP provides ongoing ethical and policy consultation on this project.
Close2018 - 2021
Granting Agency: Autism Speaks Inc.
Autism Speaks launched the MSSNG project with the overall goal to store and analyze the world’s largest collection of genomes of people with autism and their families. With the goal of sequencing the DNA of 10,000 families affected by autism, MSSNG will help answer the many questions we still have about the disorder. Thanks to the Google Cloud, this vast sea of information is accessible for free to researchers. Scientists from around the world will be able to study trillions of data points in one single database. Already, MSSNG has led to new discoveries about autism and its associated health conditions.
As part of the MSSNG Database project, the CGP is offering Data Access Compliance Office (DACO) services to the MSSNG project. From January 1st to December 31st 2019, DACO processed 30 applications (including renewals).
Close2017 - 2022
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 - 2022
Granting Agency: Genome Canada - Génome Québec
This project aims to provide evidence that can significantly expand the benefits of current agebased population breast cancer screening programs by supporting the transition to a risk-based approach. This will enable individualized risk assessment and improve the counseling process by health care providers for women. A large population-based cohort will be assembled to evaluate the acceptability and feasibility of using a new comprehensive risk prediction web tool and a genomic profiling test. The cohort will be followed to determine behavioral, psychosocial and clinical outcomes. Policies will be developed to address the socio-ethical and legal challenges for women, health professionals and decision makers associated with implementing risk-based breast screening. The CGP will provide health authorities with acceptable policies that address emergent socio-ethical and legal issues of the implementation of a personalized risk-based screening approach in Canada. To achieve this, the CGP will examine five issues via a legal and sociological transdisciplinary analysis: 1) Extension of the roles of health professionals; 2) Integration of information technologies to provide timely clinical and informational support; 3) Management of privacy when using BOADICEA with electronic health records; 4) Compliance with federal and provincial regulatory requirements and technology transfer options, and; 5) Information of women on the risks of genetic discrimination and existing protections to mitigate them. The CGP will also support the research team in regard to the ethics approvals required and specific ethical issues associated to the establishment of the research cohort.
Close2018 - 2022
Granting Agency: Genome Canada - Ontario Genomics Institute (OGI)
Cystic fibrosis (CF) is the most common fatal genetic disease, affecting 4,000 Canadians and 80,000 people throughout the world. The debilitating disease causes difficulties in breathing, lung infections, and digestive disorders and those affected die at a median age of 35 in Canada. Treatments can ease symptoms, but there is currently no cure. Newer drugs can address the underlying genetic defect that causes CF, but only some patients respond positively to them, while others do not. Given the side effects and the high cost of these drugs, there is a pressing need for robust predictors of who will respond to what treatment. Dr. Felix Ratjen (Hospital for Sick Children) and his team are developing predictive tools to help clinicians determine the right medicine for the right patient. The team will examine how genetic factors can help predict individual treatment responses and examine if drug testing on tissue samples can be used to inform the potential clinical response to drugs by each patient. The team will work with industry partners, patient organizations and the Ontario Ministry of Health to integrate these strategies into patient care. The result of the team’s work will be a shift toward individualized treatment for CF, assistance for clinicians in making treatment decisions, guidance for policymakers on reimbursement and better health outcomes for patients.
Close2019 - 2021
Granting Agency: Fonds de recherche du Québec - Santé (FRQS)
This project aims to conceptualize a participatory science platform, popBALSAC, for the collection, sharing and popularized interpretation of population research results. As the platform is built around the recruitment of participants, who provide personal and sensitive data, it is important to reflect on the ethical aspects of such an initiative. Beyond the guiding principles (TCPS) that dictate good practices to be adopted in the framework of genetic research, it is necessary to assess the degree of public awareness of the use of genetic data.
The Centre of Genomics and Policy (CGP) is contributing its experience gained over the last few years to define the scope of the project and the ethical and legal limits to be respected. Led by Dr. Yann Joly, a bioethics research professional from the CGP has documented protocols for accessing and sharing data (genetic data and research results) among the parties involved and participated in the drafting of a guide outlining approaches for managing protocols and ethical consent models.
Close2018 - 2021
Granting Agency: Terry Fox Research Institute
Cancer is the leading cause of disease?related death in children, adolescents, and young adults (CAYA) beyond the newborn period. While the overall survival rate in Canada approaches 88% for all CAYA patients (0?29 years old), the prognosis for those with refractory, relapsed or metastatic (‘hard?to?treat’) disease is grim, and progress has stagnated for many disease groups over the last three decades. To address this gap, and to make new therapeutic for CAYA patients with hard?to?treat childhood cancers, we participated in the PRecision Oncology For Young peopLE (PROFYLE) program. Overall, the program aims to transform the care of CAYA patients by using next?generation molecular tools and cancer model systems to identify disease and patient?specific biomarkers. The core of PROFYLE consists of real?time molecular profiling to personalize cancer treatment with either existing oncology drugs or repurposed drugs. The project includes the incorporation of new technologies and an emphasis on the evaluation and development of minimally invasive patient?specific biomarkers that can track the patient’s molecular profile over time. The Centre of Genomics and Policy studies questions surrounding access to genetic data by parents and the use of mobile health applications when streamlining recruitment processes.
Close2016 - 2021
Granting Agency: Le Centre de recherche du CHU de Québec-Université Laval
The aim of this project is to improve knowledge of the molecular dysfunctions associated with certain rare diseases. This project aims to : 1) Identify the genetic causes associated with certain rare diseases in children and young adults whose genetic cause has not yet been identified; and 2) obtain a better understanding of the molecular mechanisms involved in the development of these rare diseases. In addition, this project aims to establish a biobank for future research at the national and international levels. In a framework of scientific collaboration, the Centre of Genomics and Policy (CGP) oversees and prepares the ethical documents required for initial approval by the Research Ethics Committee of CHU of the Québec-Université de Laval. Subsequently, the CGP provides support on ethical and legal issues, including changes/ modifications to ethical documents or preparation of documents arising from the evolution of the project and the initiation of new collaborators with groups of international research
Close2019 - 2020
Granting Agency: Ministère de l'Économie et de l’Innovation (MEI)
ARCHI is the pilot phase of a national platform (PRECINOMICS) for centralized access and exchange of genomic and administrative health data for health research purposes. As a project, ARCHI aims to 1) integrate data from 20,000 participants enrolled in two separate research cohorts (the Montreal Heart Institute and the Canadian Partnership for Tomorrow Project); and 2) enrich these data with (gen)omics data. In addition, doubling as a proof-of-concept, the completion of ARCHI will demonstrate the maturity of data processing and sharing technologies as well as the feasibility of data sharing for precision medicine research.
In this project, the role of the CGP is twofold. First, it is to develop the access and consent governance policy for the platform. To do so, the CGP will survey existing and proposed biobank consent forms and access policies in order to identify regulatory, ethical and governance-related issues and barriers in the access model of the platform. Second, the CGP will develop the privacy and security policy for the platform. Similar to the access and consent governance policy, the CGP will sequentially survey current and proposed best practices in the data sharing ecosystem and propose recommendations matching the profile and orientation of the platform
Close2018 - 2021
Granting Agency: Fonds de recherche du Québec - Santé (FRQS)
Launched in 2018, the Transforming Autism Care Consortium (TACC) network aims to bring together the autism research community in Quebec, by improving access and availability of resources and integrating knowledge into practice. The Quebec 1000 families project (the “Q1K project”) is a TACC network’s flagship project. It provides a platform (database, biobank and registry) to facilitate research by creating a large cohort ASD family trios (proband participant, and first-degree relatives) in families where a child has been diagnosed with an autism spectrum disorder. The CGP is developing a governance framework (which includes relevant policies on privacy, data access, return of research findings, etc.), template consent forms/assent forms and support to research ethics board submission, for the Q1K project.
Close2018 - 2021
Granting Agency: National Institutes of Health (NIH)
The proposed study is designed to generate a rich body of data concerning the legal and ethical issues of international Direct-To-Participant (DTP) genomic research using a diverse sample of 31 countries. The aims described below are designed to identify and frame the issues in a way to maximize the utility of the research contributions of the international experts. Ultimately, the goal is to produce well-conceived conclusions and actionable policy options. Aim 1: Convene three expert working groups of researchers and IRB leaders to identify and prioritize the key issues for a standard questionnaire and template to distribute to the study’s 32 international experts on country-specific laws and research ethics. Aim 2: Distribute the questionnaires to the international experts, consult with and advise them as they prepare their responses to the questionnaires and summaries of country-specific legal and ethical issues, compile and analyze the responses, and draft conclusions and policy options. Aim 3: Distribute the draft conclusions and policy options to the three expert working groups, international consultants, and advisory board members, and obtain their feedback; analyze the responses and use them to prepare a final draft; write and publish a consensus article presenting the findings of the study; and disseminate the results in presentations to various groups of stakeholders
Close2016 - 2021
Granting Agency: Canadian Institutes of Health Research (CIHR)
Increasingly, Canadians are affected by chronic diseases such as cancer, cardiovascular disease, chronic obstructive lung disease, diabetes, and mental illnesses. Many of these conditions have their origins in early life (conception, pregnancy, infancy, and childhood). Canadian pregnancy and birth cohort studies have been implemented to explore hypotheses related to the Developmental Origins of Health and Disease (DOHaD). The Research Advancement through Cohort Cataloguing and Harmonization (ReACH) initiative was formerly established in 2016 to provide the Canadian research community with the means to leverage and carry out leading-edge collaborative research. The ReACH initiative provides resources in the form of a comprehensive web-based catalogue and a harmonization platform to optimize and expand the use of Canadian pregnancy and birth cohorts data and biological samples. The CGP participated by studying the existing processes addressing sharing, access and data linkage and by performing a comprehensive analysis of the ethical and legal clauses included in the documents used by these cohorts (i.e. consent forms, data sharing policies, governance framework, etc.). The CGP has compared the different clauses and processes to identify similarities and divergences and has notably developed a Points to Consider from an ethical and legal point of view, for access to research databases. Ultimately, the ReACH initiative will enhance the capacity for collaborative and cross-disciplinary research (outputs generated faster and at a lower cost); expand research perspectives (leverage national and international collaborations); improve quality of research practices; and foster the development of innovative and reliable evidence-based research on the Developmental Origins of Health and Disease.
Close2016 - 2021
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 our strengths in large birth cohort studies, clinical trials and studies on developmental programming of metabolic disorders, our transdisciplinary Sino-Canadian team will conduct a community-based multicentre cluster-randomized controlled trial to test the effect of an evidence-based and multifaceted early life-course community family-mother-child interventions package incorporated into the routine pre-conception, prenatal and child care systems on childhood OWO rates in 1-6 year old children in China. 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.
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 genomics analysis, and implement services that apply new cutting-edge algorithms for the interpretation of cancer genomes. Our design and implementation plans are based on feedback from our Canadian and international user community, and on our own hands-on experience coordinating international genome analysis projects across petabyte-scale data sets. The CGP will be involved in the ethical and policy questions surrounding the sharing of data and the use of e-tools to facilitate adjudication processes.
Close2016 - 2021
Granting Agency: Canadian Institutes of Health Research (CIHR)
The gender dimorphic effects of prenatal stress are well demonstrated. Girls may be more susceptible to the effects of fetal adversity on fearful temperament, emotional reactivity and internalizing problems. Little research has examined whether gender differences in the case of fetal adversity are maintained in the prediction of anxiety and depression in older children. A landmark study reports that maternal prenatal depression is associated with an increased risk of depressive symptoms in 18 year-old female offspring. It suggests the need to consider the interaction between gender and prenatal adversity and the role of genotype and postnatal environments. Accordingly, gender considerations will be approached as follows: (1) careful examination of gender-based age-specific trends in the development of anxious and depressive psychopathology from preschool through pre-adolescence; (2) the moderation of gender effects for anxious and depressive psychopathology by genetic susceptibility; (3) the role of early maternal care; and, (4) early temperamental signals of vulnerability to anxious and depressive psychopathology. The CGP’s role is to design ethical and legal guidelines for: (i) the safeguarding of pediatric genomic data; (ii) the sharing of data across four national jurisdictions; (iii) the maintenance of standards by international IRB’s; and, (iv) the consent for data use from children, as they become adults.
Close2018 - 2022
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.
Close2019 - 2021
Granting Agency: Fonds de recherche du Québec (FRQ) - Ministère de l'Économie et de l’Innovation (MEI)
Our research question aims to validate, specify and prioritize the potential ethical, legal and social implications (ELSI) associated with the introduction of artificial intelligence (AI) within the World Anti-Doping Agency’s (WADA) anti-doping strategies. This will be accomplished using a consensus-building approach whereby the perspectives of a group of experts with varied expertise will converge onto a forward-looking approach for the ethical application, regulation and design of AI within an anti-doping context.
Our study’s main objective, as stated earlier, is to assess the potential benefits of, challenges with and solutions for an ethically responsible implementation of AI within anti-doping strategies, according to experts from around the world engaged in related administrative, professional, research and advocacy activities. This main objective will be attained by: a) validating existing theoretical expectations and concerns surrounding AI with expert opinion; b) specifying the ELSI raised by the introduction of AI in the particular context of anti-doping; and c) prioritizing the ELSI based on their level of importance, according to our panel of experts.
Ultimately, we aim to better inform and facilitate 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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