Projets de recherche complétés
2003 - 2004
Organisme subventionnaire: Institut de recherche en santé du Canada (IRSC)
Les deux préoccupations sous-tendant la question de la terminologie utilisée pour expliquer aux participants à des recherches le degré de confidentialité auquel leurs données seront soumises sont d’ordre pratique et conceptuel. Conceptuel, en cela que la validité d’un consentement à la recherche (et par conséquent, l’autonomie et la vie privée de la personne) peut être sévèrement compromise si le degré de protection des échantillons ou des données n’est pas totalement comprise. Pratique, puisque dans le cas des bio-banques, l’utilisation d’échantillons pour fins de compilations de données peut être mise en péril si les chercheurs emploient des termes contradictoires pour définir les différents mécanismes utilisés pour assurer la confidentialité.
La situation devient particulièrement inquiétante dans le monde déjà explosif qu’est la recherche génétique, domaine où la collecte d’échantillons et de données est désormais la norme. Appliquée au domaine en devenir qu’est la génomique de population, une telle situation risque de faire échouer les efforts concertés de collaboration internationale sur le génotypage et le phénotypage. Le degré d’identification est essentiel quant à la détermination des règles éthiques et juridiques applicables. Par conséquent, l’harmonisation de celles-ci devient essentielle.
La complexité de l’étude des définitions utilisées ou proposées à ce jour, du niveau de protection offert et, du besoin ou de l’inutilité d’un examen éthique (dépendamment des définitions) est accentuée par la multitude de lois gouvernant le domaine des données médicales, personnelles ou génétiques. Malgré cette complexité, il semble possible d’accéder à une certaine simplicité et d’envisager une harmonisation, si des éléments communs peuvent être discernés, un dialogue entre les contributeurs institutionnels sur l’actuel lexique contradictoire est initié (Phase I), et un effort tendant l’élaboration d’un consensus est fait. (Phase II)
Close2009 - 2012
Organisme subventionnaire: Fonds de la recherche en santé du Québec
Q-CROC is developing a provincial-wide network of collaborators which includes oncologists, surgeons, pathologists, clinician-scientists and basic researchers. Q-CROC has the objectives of improving and developing translational and clinical research.
Q-CROC aims to identify and validate biomarkers specific to clinical resistance to FOLFOX and bevacizumab, in the development of a standardized first line treatment for metastatic colorectal cancer. The aims are to 1) create a unique and unprecedented clinical resistance biobank, and 2) use these biospecimens to identify biomarkers that can be rapidly translated to the clinical setting. The project starts with identification and validation of biomarkers from candidates drawn from the literature or from the research labs of Q-CROC scientists. It continues with a search for new biomarkers and functional validation of the most promising of these in order to obtain insights into mechanisms of resistance. The ultimate goal is to speed the development of personalized medicine through better patient and treatment selection, and to generate new knowledge on therapeutic resistance in the clinical context. The CGP oversees the legal and ethical aspects of Q-CROCs translational project including patient protection, the drafting of consent forms, and the outlining of rules that govern access to bio-specimens. Dr. Knoppers also acts as Chair of the Q-CROC Ethics Committee.
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2008 - 2015
Organisme subventionnaire: Institut de recherche en santé du Canada (IRSC)
CanGeneTest is an international knowledge and research network studying the challenges posed by healthcare treatments and policies, including those related to genetic laboratory services. Its general objective is to improve technological transfer of clinically useful genetic innovation having an interesting cost/ efficiency ratio for the healthcare system, and to promote healthcare policy development in light of probative statistics. Using a multidisciplinary approach, the CGP studies the development of the genetic screening test and its discovery in the fundamental research lab, up to its use in the clinical context. Furthermore, with the help of an electronic newsletter and a website, we contribute to the dissemination of relevant and accurate information to all our colleagues interested in this research field. This work downstream from gene discoveries is necessary to translate clinically relevant and useful studies into innovative health care.
The CGP specifically addresses two major legal, ethical and social issues for this project: 1) intrafamilial issues; and 2) false-positive results in newborn screening.
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2015 - 2020
Organisme subventionnaire: Génome Canada
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.
Close2013 - 2016
Organisme subventionnaire:
The Personalized Medicine Partnership for Cancer (PMPC) projects, lead by Caprion Proteome, are expected to have a measurable impact on clinical diagnosis and therapeutic management of various cancers as well as on the efficiency and costs of the healthcare system by developing an integrated clinical platform to validate new biomarkers, develop new diagnostic tests as well as improved therapies. The CGP is leading the sub-project “Insurance and personalized medicine”, which aims to account for the legislative, regulatory, and normative changes needed to maximize societal benefits related to the use of genetic data in clinical cancer research in Quebec. Our main objectives include: 1) analyzing the normative insurance framework in Quebec; 2) reviewing insurance proposition form requirements; and 3) analyzing consent forms (for diagnostic tests in clinical and research contexts).
Close2011 - 2012
Organisme subventionnaire: CRSH - Conseil de Recherches en Sciences Humaines du Canada
Whether faced by a new technology, climate change or an environmental and economic crisis, societies -- as individuals, groups and communities -- need to develop a broad capacity early on to prepare for the future impacts of such transformative events. Efforts to control or respond to these ever present societal challenges have tended to focus on "prediction" or alternatively, creation of policies that envision a deterministic future. Yet, social events with long lasting impacts such as environmental change, military conflicts or technology innovations are often unpredictable by their very nature. The traditional "predict-and-control" framework is therefore inadequate for complex social change and transformative innovations. Anticipatory governance is a new approach for managing the uncertainties posed by future(s) of innovations and the prospective understanding of transformative social changes in rapidly moving and dynamic fields. The goal of anticipatory governance is not to predict or forecast a singular future but to develop foresight on multiple possible future(s). It builds on the principles of incrementalism and collective learning, and explores the representations of alternative future(s) in the present as perceived by a diverse set of stakeholders, both expert and lay. As such, it signals a shift towards "looking at" rather than "looking into" the future(s). The aim of this study is to characterize the methodologies used in foresight and anticipatory governance analyses over the past decade and the context in which they have been utilized.
2011 - 2014
Organisme subventionnaire: Genome British Columbia
Water quality is primarily assessed at the tap using coliform bacterial species as indicators of microbial pollution, a paradigm which reflects an anthropocentric focus on drinking water and human health. Metagenomics is a "culture-independent" method for analysis of multiple microbial genomes, for example, in the drinking water. Importantly, water safety and genomics together create a highly volatile postgenomics innovation trajectory for metagenomics applications in public health and ecosystem health. This study comprises three stages. First, we will identify the metagenomics stakeholders for water safety in consultation with the water and metagenomics experts and through metagenomics and water safety document analyses and interviews. Second, the issues associated with a new watershed test that may impact each stakeholder group will be identified through complementary social science methodologies including document analyses, literature reviews, surveys, focus groups and interviews. Third, we will hold a multi-stakeholder workshop to present, negotiate and validate the identified social, legal, ethical and policy issues in the form of a "points-to-consider" document to inform prospective policy.
2020 - 2022
Organisme subventionnaire: DNA Stack
The cost of biomedical data generation has decreased exponentially, due to technologies like genome sequencing and biometric tracking devices, with a corresponding increase in the volume and diversity of data. By 2025, there will be more genomic data generated than content uploaded to YouTube. Due to the size, complexity and sensitivity of biomedical data, traditional practices for searching and analyzing large co-located datasets do not work. New technologies must be developed to connect and derive insights in a federated model from networks of heterogeneous datasets translating to clinical and pharmaceutical applications in precision health.
Autism spectrum disorders (ASD) are a set of complex conditions characterized by difficulties in social interactions and communication, as well as repetitive behaviours, which collectively affect ~1% of the population. Today, there are no approved drugs designed to treat the core features of ASD. Those affected are treated with medicines designed for other conditions. There is great promise in resolving the complex causes of ASD (and many other disorders) by sharing large volumes of biomedical data from diverse geographic populations.
In 2019, DNAstack, Autism Speaks, and AIMS-2-Trials co-founded the Autism Sharing Initiative (ASI), with the goal of uniting the world's most ambitious efforts in autism to create the first federated, global sharing network to accelerate discoveries and development of precision therapeutics.
This project will accelerate the mission of ASI by (1) building general-purpose technology to connect biomedical data into knowledge-sharing networks, (2) expanding the network to include new high-value data resources, (3) developing a platform to engage individuals with autism and their families, (4) building applications advancing precision diagnostics and therapies in autism, and (5) creating policies for responsible data sharing in the network.
Close2004 - 2005
Organisme subventionnaire: Institut de recherche en santé du Canada (IRSC)
La récente apparition du SRAS a déclanché le besoin de créer une agence nationale de contrôle et de surveillance des maladies au Canada. Une agence fédérale de ce type jouera un rôle clé dans la réponse aux épidémies par la surveillance des activités et l’implantation des mesures de contrôle afin de limiter et de stopper l’épidémie en question. Cependant, la nature et l’étendue des compétences du gouvernement fédéral dans l’établissement d’une telle agence est une question critique à laquelle il faut répondre. Les objectifs principaux de ce projet sont : identifier et décrire les bases juridiques nécessaire à la création d’une agence nationale de contrôle et de surveillance des maladies au Canada; analyser les enjeux juridiques susceptibles de définir le mandat et de contraindre le pouvoir d’une telle agence. Dans un premier temps, de ce projet identifiera les pouvoirs du gouvernement fédéral en lien avec la santé publique et, dans un deuxième temps, étudiera les compétences légales de l’agence fédérale en matière de surveillance et d’imposition de mesures de contrôle telles que la quarantaine et le dépistage obligatoire. Cette recherche s’inspirera de l’expérience du Canada avec le SRAS et débouchera sur vaste analyse juridique qui assistera les législateurs, les décideurs et les administrateurs en santé publique dans leur préparation pour la prochaine épidémie au niveau national.
Close2010 - 2015
Organisme subventionnaire: The European Commission
BioSHaRE-EU has assembled a consortium of leading international researchers from all domains of biobanking science. These experts are working to develop and apply methods and tools that will provide a foundation for an ambitious program of harmonization and standardization in European biobanks and major biomedical studies. This facilitates the full participation of European bioscience in the next phase of international aetiological research that demands access to studies that have 3 complementary characteristics: 1) participants must be comprehensively assessed not only for genotype, but also for phenotype; 2) measurement quality must be high; and 3) because no single study will provide adequate numbers of subjects for certain questions, biobanks must therefore be harmonized and standardized so that studies can pool biobank data in valid and effective ways. The CGP is involved in the development of ethical, legal and social guidance in order to harmonize the treatment of environmental risk and personal life-style data in and from different European biobanks. The CGP also offers BioSHaRE its ethical expertise in issues of privacy and retrospective access to samples and data.
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2018 - 2020
Organisme subventionnaire: Allergen
The development and implementation of an ethically and legally robust governance structure for research biobanks and databases is a pre-requisite to building and maintaining the trust of funders, research participants, research ethics boards, and collaborators. A comprehensive governance framework and related policies not only provide immediate guidance for the managers, researchers, participants and other stakeholders involved in the project, but also fosters a continuous and uniform management of the resource for future prospective uses. Since the financial support of AllerGen to the Canadian Healthy Infant Longitudinal Development (CHILD) Study will soon come to an end, time is of the essence to develop and implement a governance framework to ensure maintenance of the scientific utility, validity and usability of the datasets and biospecimens generated by the CHILD Study, for the future. Currently, datasets and samples collected as part of the CHILD study are heterogeneous and vary across different recruitment sites. The Governance Framework provides a common ethical and policy structure for the future use of these datasets and samples so that the voluntary participation of Canadians is respected. The purpose of this Governance Framework is to provide a general overview of the core elements related to the management, operations and ethical governance of a health database and, where applicable, an associated biobank. Detailed policies and procedures also accompany this guidance.
Close2005 - 2006
Organisme subventionnaire: Santé Canada
Recherche et analyse des lois applicables à la santé publique, à la protection de la vie privée et aux situations d'urgence afin d'évaluer les possibilités d'échange d'information entre les différentes juridictions et les barrières à ces échanges.
Close2019 - 2021
Organisme subventionnaire: Brain Cancer Foundation
The Canadian Open Neuroscience Platform (CONP) aimed to bring together many of the country’s leading scientists in basic, translational, and clinical neuroscience to form an interactive network of collaborations in brain research, interdisciplinary student training, international partnerships, clinical translation and open publishing. The platform provided a unified interface to the research community, so as to propel Canadian neuroscience research into a new era of open neuroscience research with: the sharing of both data and methods; the creation of large-scale databases; the development of standards for sharing; the facilitation of advanced analytic strategies; the open dissemination to the global community of both neuroscience data and methods, and the establishment of training programs for the next generation of computational neuroscience researchers. CONP aimed to remove the technical barriers to practicing Open Science and improve the accessibility and reusability of neuroscience research to accelerate the pace of discovery.
The CGP hosted the Ethics and Governance Committee for the CONP to ensure neuroscience data are shared in a respectful and responsible manner. The Committee is Chaired by Prof. Knoppers and managed by Michael Beauvais. The Committee has generated an Ethics and Data Governance Framework, as well as Publication and Commercialization Policies to promote responsible open neuroscience and a Portal privacy policy to ensure the responsible use of portal users’ data by CONP. The Committee’s Open-Science consent clauses and retrospective filter are soon to be completed, with authentication policies and other novel outputs in the pipeline.
Close2009 - 2022
Organisme subventionnaire: Canadian Partnership Against Cancer
The Canadian Partnership for Tomorrow’s Health (CanPath) has enrolled 300,000 Canadians between the ages of 35 and 69 years, who have agreed to be followed for their adult lifetime, to explore how genetics, environment, lifestyle, and behavior interact and contribute to the development of cancer and other chronic diseases. This pan-Canadian project has seven participating cohorts (Atlantic PATH, CARTaGENE, Ontario Health Study, Healthy Future Sask, Manitoba Tomorrow Project, Alberta’s Tomorrow Project, and the BC Generations Project). The project’s Ethical, Legal, and Social Issues (ELSI) Committee is hosted at the CGP and is responsible for developing ELSI infrastructure for the CanPath platform. Its goals are to bring together ELSI experts and develop relevant policies, documents, and procedures that are needed either by CanPath or by a specific cohort and to ensure the conformity of the platform with legislation and ethics guidelines so as to prospectively guide the cohorts. The ELSI Standing Committee’s mandate is broad, ranging from developing interoperable recruitment, access policies, and procedures to dealing with ethical issues surrounding consent, privacy, data sharing, and proposing governance structures for CanPath.
Close2009 - 2013
Organisme subventionnaire: Institut de recherche en santé du Canada (IRSC)
Adverse drug reactions (ADRs) are in the fifth most frequent cause of death in North America North America. Half of these reactions are likely caused by inherited genetic differences and are currently considered ‘unavoidable’. This project aims to understand why certain drugs are safe for use in some children but not in others and then to create easy to administer diagnostic tests that will predict and therefore prevent specific ADRs in children. To meet their goals, CPNDS is collecting data through a Canadawide surveillance network that operates within nine of Canada’s largest children’s hospitals. They then perform large-scale genomic and proteomic studies to define genes critical for ADRs. These results are being used to help develop diagnostic tests to recognize a child’s genetic fingerprint and allow personalized dosing recommendations to be implemented for commonly used drugs.
Close2016 - 2021
Organisme subventionnaire: Fondation canadienne pour l'innovation (FCI)
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 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 CGP 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.
Close2007 - 2010
Organisme subventionnaire: Génome Canada
CARTaGENE cherche à créer une ressource pour l’avancement de la recherche en génétique, ayant comme but d’améliorer la santé des Québécois. Cette ressource publique est opérée sous un cadre de gouvernance et consiste en une banque de donnée ainsi qu’une biobanque de 20,000 individus, dans sa Phase A, et 30,000 individus dans sa Phase B. La banque de donnée contient des données environnementales, démographiques et sur la santé. Cartagène contient de l’ADN ainsi que des échantillons de sang et d’urine.
Close2014 - 2020
Organisme subventionnaire: Conseil de Recherches en Sciences Humaines du Canada (CRSH)
The objective of the project is to create and expand a biomedical ecosystem that overcomes the major rate-limiting steps involved in realizing and expanding biomarker-driven clinical research for personalized medicine in cancer. This will be achieved through: 1) ready access to a collection of engaged patients, their tumors, and clinical data collected in a prospective and longitudinal manner that conforms to the highest standards of ethics and quality; and 2) an advanced program in serial biopsies of metastatic tumors that defines the molecular signature of resistance to new targeted agents allowing the industry to modify the drug or add combinations to overcome or avoid resistance and greatly expand the clinical benefit to patients. The Centre of Genomics and Policy provides a review of the ethical and legal issues while ensuring that consent respects the federal and provincial legal requirements (on re-use of samples, governance, confidentiality, data-sharing, e-consent, risks, etc.). Other considerations reviewed by the Centre concern public-private partnerships.
Close2013 - 2016
Organisme subventionnaire:
The aim of this project is to collect and analyze facts and figures to assess the current legislation on the therapeutic use of somatic cells, and to bridge it with the research infrastructure capacity building. The project is based on a coherent consortium of experts in the fields of cell therapies, cell banks and translational biomedicine, having strong expertise in law and / or in governance issues to provide evidence about the contemporary practices around cells and design a picture of the “market” and its distribution between the public and private sector. The CGP’s role in the project is to examine and enhance the understanding and interpretation of national, regional, and international legal and ethical issues surrounding umbilical cord blood (UCB) research and provide recommendations. This is a critical and logical step towards building a robust implementation process for the ethical and legal frameworks governing UCB research, banking and clinical applications in Europe, so as to harness its potential for novel therapeutic applications. The project will thus help the Commission in the regulatory choices covering the use of human cells for therapeutic purposes and to foster the innovation potential of related research activities.
Close2007 - 2009
Organisme subventionnaire: Réseaux de centres d'excellence (RCE)
Les principaux objectifs de ce projet sont de faciliter l’accès aux échantillons de sang de cordon ombilical pour la recherche clinique et générale et d’assurer le niveau de compétitivité des chercheurs canadiens dans le monde en mouvance de la recherche sur les cellules souches adultes (éthiques et légaux).
2012 - 2014
Organisme subventionnaire:
CCRM is a Canadian, not-for-profit organization supporting the development of foundational technologies that accelerate the commercialization of stem cell- and biomaterials-based products and therapies. CCRM is supported by the Centres of Excellence for Commercialization and Research (CECR) Program.
The CCRM Ethics and Policy Unit is housed at the Center of Genomics and Policy, McGill University. The overall objective of the Ethics and Policy Unit is to provide gold standard policies on Socio-Ethical and Legal Issues (ELSI) related to commercialization for CCRM core activities as well as on communication strategies.
Close2007 - 2009
Organisme subventionnaire: Gouvernement du Canada
La chaire a pour objectif de définir des politiques nationales et internationales pour encadrer les gestes posés par l’industrie, les chercheurs et les gouvernements dans le domaine de la génétique. En effet le sprint final de la course au génome aura eu des allures de ruée vers l’or : des milliers de chercheurs travaillaient jour et nuit à identifier le patrimoine génétique de l’humanité pendant qu’autant d’autres multipliaient les façons d’utiliser ces nouvelles connaissances. Au milieu du tumulte, une voix s’est élevée pour démontrer la nécessité d’adopter un code d’éthique de la génétique. Afin de soutenir la recherche le projet Génétique et Société a mis en place une banque de données contenant des textes normatifs provenant de partout à travers le monde. La chaire contribue également aux activités de l’IREB dont les trois axes d’intervention sont : l’éthique de la recherche, la génétique humaine en terme de recherche et soins, les systèmes de santé et les réseaux de soins.
Close2008 - 2013
Organisme subventionnaire: Institut de recherche en santé du Canada (IRSC)
This CIHR Emerging Team examines two areas where genomics meets every day health care and general populations: 1) using family history information in predicting risk of common diseases and 2) screening newborns for rare but serious inborn metabolic diseases. The team is also engaging with citizen groups and health professional groups to understand their reactions to upcoming developments in ‘genomic profiling’, where DNA is used to assess susceptibility to common diseases in both adults and children.
2008 - 2012
Organisme subventionnaire: Institut de recherche en santé du Canada (IRSC)
ECOGENE-21 is a cohesive, transdisciplinary initiative driven by the specific needs of communities. ECOGENE-21 builds upon previous, ongoing and emerging local, national and international projects and networks of expertise in community genetics. Its objectives are to develop, validate, apply and replicate new cost-effective technologies and screening strategies to prevent recessive diseases in founder communities and common diseases at the community level. ECOGENE-21 also strives to develop the expertise and platforms needed to generate, apply, validate, and replicate within and across communities, new knowledge from genomics research.
2008 - 2013
Organisme subventionnaire: Institut de recherche en santé du Canada (IRSC)
The overarching goal of this project is to thoroughly evaluate the prediction of breast cancer risk and its communication to individuals with a family history of breast cancer. The 4 components of the program are designed:
- To determine the contribution of uncommon or rare intermediate-risk variants in selected candidate genes to the genetic population attributable fraction and the familial relative risk of breast cancer, and to assess the robustness of their risk in women ascertained through clinic-based and population-based studies.
- To improve estimation of breast and ovarian cancer risks associated with mutations in BRCA1 and BRCA2 genes by identifying the genetic and environmental modifiers that may influence these risks.
- To integrate the knowledge on newly identified genetic an environmental factors, as well as biologic markers, in breast cancer risk prediction models providing individual risk estimates.
- To assess communication of risk prediction information by health professionals and the impact of such information on women at moderate to high risk of the disease.
This program is identifying specific genetic factors contributing to breast cancer susceptibility, in particular, yet poorly explored, uncommon or rare intermediate-risk variants that potentially explain a significant proportion of missing familial risk of breast cancer. Some of these could enter clinical cancer genetics practice in the foreseeable future.
2007 - 2010
Organisme subventionnaire: Alliance canadienne pour la recherche sur le cancer du sein (ACRCS)
Le CBCRA est l’organisme subventionnaire le plus important au Canada en recherche sur le cancer du sein, et joue un rôle déterminant dans l’établissement des priorités et directions de la recherche sur le cancer du sein.
Le cancer du sein (CS) ainsi que le cancer, « courent dans les familles ». Le diagnostic d’un gène associé au cancer du sein chez un individu sous-tend que d’autre membres de la famille pourraient être affectés. Durant le projet INHERIT BRCAs, subventionné par les Instituts de recherche en santé du Canada (IRSC), nous avons étudié les enjeux juridiques et éthiques de la communication des résultats d’études, par des professionnels, aux participants; de la reprise de contact avec les participants; et du contact des membres de la famille.
La présente étude complète les études précédentes sur les obligations légales ou éthiques encadrant la communication d’information de nature génétique. Elle examine la possibilité que les membres de la famille aient des obligations différentes des autres tiers (e.g. : médecins, des tiers qui ne sont pas directement impliqués mais qui seraient intéressés par les résultats) dans la communication d’information relative au cancer du sein.
En utilisant nos résultats, nous évaluerons les obligations légales actuelles au Canada, suggérant comment (et si) cette communication devrait avoir lieu, et déterminant les impressions des participants concernant ces enjeux éthiques et légaux.
2012 - 2012
Organisme subventionnaire:
The main objective of this project is to develop tools for optimizing access to ethically sourced umbilical cord blood (UCB) for research. UCB is considered a valuable source of stem cells for research and clinical applications. Furthmore, UCB transplantation is standard practice for the treatment of blood disorders and studies suggest their potential use for the development of novel blood and immune-based therapies. Canadian Blood Services (CBS) will establish and operate the national OneMatch Public Cord Blood Bank (OMPCBB) that will be accessible to Canadian and international patients. The OMPCBB will promote efforts that contribute to research and improved clinical care by making non bankable units available for research. In this context, the development of harmonized tools for UCB collection and uses that meets the needs of all stakeholders is critical. In partnership with CBS and other stakeholders, we will develop practical tools to enable ethical provenance of UCB stem cells as well as policy recommendations for UCB research (e.g. informed consent protocols, information pamphlets for donors and ethics review boards) to facilitate the interpretation of guidelines and ensure research is performed within a strong ethical and legal framework.
Close2019 - 2021
Organisme subventionnaire: Fonds de recherche du Québec - Santé (FRQS)
In recent years, genetic testing available to consumers online through private companies, also known as direct-to-consumer (DTC) genetic testing, has increased significantly. A growing number of individuals now have access to information about their genome, which represents a person’s complete set of genes. With this information, people are able to discover information about their ancestors, genealogical links with other people and, in some cases, genetic risk factors.
DTC genetic testing has enabled the assembly of large cohorts, which represent a group of people that can provide valuable information for scientific research. However, this information remains mostly under the control of private companies, limiting opportunities for research.
The objective of CopaQ is to develop a platform for the collection, sharing, and simplified interpretation of population research results. This platform will collect genetic, genealogic and basic demographic information from individuals who have already performed a genetic test with a private company (e.g. 23andMe, Ancestry, etc.) in order to securely share this information with members of the research community that agree to protect its confidential nature. The CGP is developing the consent form for this project and also advises on ethical and legal issues.
Close2005 - 2005
Organisme subventionnaire: Fondation canadienne de la recherche sur les services de santé (FCRSS)
L’objectif de l’atelier est d’apporter des éléments de réflexion autour de l’utilisation de l’Internet et Intranet comme outils de transfert de connaissances. Plusieurs gestionnaires de sites Internet et Intranet nous feront part de nombreuses leçons à tirer ainsi que des défis à relever face au transfert des informations sur Internet et Intranet.
Close2020 - 2021
Organisme subventionnaire: Digital Technology Supercluster
As COVID-19 continues to spread globally, there is an urgent need to understand the DNA footprint of this rapidly evolving virus. Led by DNAstack, the COVID Cloud Project harnesses Canada’s genomic research capabilities to rapidly sequence, share and analyze the genomic profile of COVID-19 and the people who have contracted it in Canada and around the world. This information will help inform the development of public health policies, diagnostics, therapies and vaccines. The team at the CGP will map relevant provincial, federal, and international data privacy laws and research ethics regulations and will work to determine how their application is affected in emergency situations. We will further work to design a streamlined access model based on the international GA4GH research passport standard, allowing credentialed researchers to access data and search networks for specific purposes, including COVID-19 research. We will promote these efforts through online videos and workshops.
Close2011 - 2012
Organisme subventionnaire:
This project will develop cell therapies for the treatment of corneal limbal stem cell deficiency (“LSCD”). LSCD is a severe disease caused by damage or depletion of the corneal stem cells in the limbus region of the eye following trauma or disease. Once the corneal stem cells are destroyed, the epithelial tissue on the surface of the cornea can no longer regenerate or heal spontaneously, resulting in chronic inflammation, conjunctivalization, and vision loss. To treat LSCD patients, we have developed a tissue engineering technique involving massive expansion of epithelial cells in vitro to produce epithelial sheets for autologous transplantation (cultured epithelial corneal autografts – “CECA”). After twenty years or more of experience using epidermal cultured autografts (“CEA”) on burn patients for skin grafts, we have successfully demonstrated the effectiveness of CECA (animal models) and reconstructed human corneas in vitro (CECA). We are ready to obtain approval from Health Canada to begin CECA trials for the cornea. Our team of researchers, clinicians and ethical/legal experts will be the first in Canada to offer treatment for unilaterally blind or vision impaired patients suffering from LSCD.
Close2011 - 2014
Organisme subventionnaire: Institut de recherche en santé du Canada (IRSC)
The objective of this study is to create Canadian recommendations and other resources for electronic consent for future research use of data and biological materials. Informed consent signals the primary duty to inform and protect research participants. Providing consent is based on the right of research participants to exercise full autonomy in decisions affecting their health and personal privacy. As technologies in medical research improve and research questions become increasingly complex, there is a need to recruit new participants, as well as use previously-collected data and biological materials to increase statistical power and minimize the burden on research populations. This application addresses the need for guidance in the use of research data and biological materials to answer questions that were not planned or known at the time of collection.This guidance will provide recommendations for the use of data and biological materials that have already been collected and provide recommendations and a model electronic consent process for data and biological materials that will be collected in the future. Specifically we will: 1. Evaluate the feasibility of creating a digital governance system in Canada by identifying the legal and ethical issues relating to the use of an electronic approach to consent for future research use of data and biological materials; 2. Draft an Electronic Consent Governance Framework Report with actionable recommendations, and validate it with pertinent stakeholders (ethics boards, patient organizations); 3. Develop a model form for electronic consent, which could be adapted to different types of research and sites, across disease groups, and across populations with an emphasis on the needs of the aging population.
Close2006 - 2007
Organisme subventionnaire: UNESCO
Notre équipe a été retenue afin d'assister dans les premières phases de développement d'un réseau de bases de données: l'Observatoire mondial de l'éthique. Nous travaillons présentement à la création d'une base de données regroupants des lignes directrices, des lois et des règlements relatifs à la bioéthique.
Le but de cette partie du projet est de fournir de l'information quant à l'impact de ces trois documents de l'UNESCO relatifs à la bioéthique:
- Déclaration universelle sur la bioéthique et les droits de l'homme (2005)
- Déclaration internationale sur les données génétiques humaines (2003)
- Déclaration universelle sur le génome humain et les droits de l'homme (1997)
La phase préparatoire comprend le recensement de la législation canadienne, les lignes directrices et la jurisprudence relatives à la bioéthique selon cinq thèmes principaux: la recherche clinique avec des sujets humains, l'accès aux soins de santé, le conseil génétique, la protection des générations futures et la liberté de la recherche scientifique.
Close2004 - 2009
Organisme subventionnaire:
Ce projet résulte d’une collaboration entre plusieurs disciplines dont l’épidémiologie, la génétique, l’éthique, le droit et la philosophie des sciences. Il implique des chercheurs provenant de sept centres différents en Norvège, en France, au Portugal et au Royaume-Uni. Le but de ce projet est d’étudier certains défis éthiques, légaux et sociaux soulevés par les différentes formes de biobanques. En plus de l’analyse des différentes législations, des autres formes d’encadrement et des débats publics entourant les biobanques en Europe et dans d’autres juridictions pertinentes, le projet prévoit une étude « in vivo » des enjeux éthiques, légaux et sociaux susceptible de survenir à l’intérieur de deux projets en génomique : Biohealth-Norway et Genomeutwin.
Close2005 - 2008
Organisme subventionnaire: CRSH - Conseil de Recherches en Sciences Humaines du Canada
Ce projet-pilote veut servir à élaborer les paramètres d'une enquête ultérieure, qui se concentrera sur le dépistage de l'anémie falciforme et pour laquelle nous ferons ultérieurement une demande complète. Nous avons choisi de développer une méthodologie novatrice qui vise à impliquer la participation de la communauté dans toutes les étapes du projet de recherche. Dans un premier temps, nous réunirons une dizaine de personnes provenant de divers milieux, mais connaissant la communauté en cause, afin de déterminer quels individus devraient former un groupe qui la représente. Dans un deuxième temps, nous formerons ce groupe représentatif, à qui nous demanderons de répondre aux trois questions suivantes: 1) Quels enjeux éthiques et sociaux du dépistage génétique préoccupent la communauté? 2) Quelles méthodes d'enquête permettront le mieux de connaître les positions de la communauté? 3) Quels sont les moyens les plus efficaces pour solliciter les participants? Par la suite, nous tenterons de valider notre méthode en faisant une analyse comparative des réponses du groupe représentatif avec d'autres sources. Cette comparaison se fera avec les résultats d'une revue de la littérature sur les méthodes d'enquête utilisées avec les groupes multiculturels. Une autre source de comparaison sera des entrevues téléphoniques avec des chercheurs qui ont développé de l'expertise avec des communautés multiculturelles sur des questions relatives à notre enquête. S'il existe des différences importantes avec le groupe représentatif, nous pourrons conclure qu'il est nécessaire d'élaborer des paramètres d'enquête en collaboration avec la communauté concernée par la recherche, comme nous l'aurons fait dans ce projet pilote. Les résultats nous permettront d'identifier ce qui apparaît être les meilleurs paramètres à adopter pour l'enquête que nous projetons de faire. De là, nous établirons les enjeux qui devraient faire l'objet de cette future enquête et choisirons les techniques d'enquête qui apparaîtront les mieux adaptées à la situation.
Close2020 - 2022
Organisme subventionnaire: Génome Canada
The Canadian COVID-19 Genomics Network (CanCOGeN) was launched to coordinate and upscale the existing genomics-based research efforts to study the SARS-CoV-2 virus and COVID-19. The CanCOGeN project is organized into components focusing on human-disease component (HostSeq) and virus (VirusSeq) to address topics unique to each.
CanCOGeN-VirusSeq has multiple goals such as tracking viral transmission and exploring a multitude of pressing topics, such as the variability across patient outcomes, with each better informing both research and Public Health.
Currently, Prof. Yann Joly serves as the chair of both the CanCOGeN-VirusSeq Ethics and Governance Committee and the CanCOGeN Data-Sharing Committee, while also acting as an active member the VirusSeq Implementation Committee. Lingqiao Song and Hanshi Liu are also members of the CGP (CGP) who actively contribute to the various ethical and legal topics in the project. Overall, as a part of CanCOGeN-VirusSeq, the CGP team addresses essential ethical and legal issues derived from the CanCOGeN project.
Close2008 - 2013
Organisme subventionnaire: Institut de recherche en santé du Canada (IRSC)
The goal of this project is to create a multidisciplinary team to develop strategies for uptake of nanotechnology-derived data sets. The scientific interest of this project is the identification and validation of genes that cause or predispose to brain diseases. Our team is developing approaches for interpretation and follow-up of the genetic information arising from nanosequencing in human patients. Tourette Syndrome (TS) is used as the major model of a brain disease disorder for implementation of these goals.
2004 - 2005
Organisme subventionnaire: Santé Canada
Les objectifs de ce projet sont (1) l’identification et la description de l’encadrement normatif des maladies à déclaration obligatoire pour différents pays et organismes et (2) l’élaboration d’un tableau comparatif des lois et lignes directrices portant sur le sujet. Les pays étudiés sont : l’Australie, la Nouvelle-Zélande, le Royaume-Uni, les États-Unis. À ceux-ci s’ajoutent l’Organisation mondiale de la santé et l’organisation panaméricaine de la santé.
2013 - 2017
Organisme subventionnaire:
CARE for RARE is a collaborative pan-Canadian project configured to improve the diagnosis and treatment of rare diseases. Powerful new DNA sequencing methods such as wholegenome (WGS) and whole-exome sequencing (WES) will be used to discover 60 new genes, each of which causes a rare disease. The identification of new genes provides useful biological information, giving us insight into cellular pathways significant in human health. It is hoped that the research will lead to the implementation of WES as an effective and reliable diagnostic tool for clinical use. However, in order to facilitate the integration of WES into the clinical setting, the GE3 LS component of this study, which will be conducted at the Centre of Genomics and Policy, will include: 1) the drafting of clinical exome trial consent forms; 2) a qualitative analysis of the clinical utility of WES as a diagnostic tool for patients with rare diseases (from the patients’ and clinicians’ point of view); 3) the drafting of a national position statement and best practices outlining professional and ethical standards for the reporting of incidental findings found using WES; and 4) the development of clinical integration tools for use by clinics offering exome sequencing to patients with rare diseases.
Close2018 - 2020
Organisme subventionnaire: Erasmus Medical Center
Epigenetics is the study of molecular mechanisms for the regulation of gene expression, such as DNA methylation, that switch genes off or on without altering the DNA sequence. The Building Blocks of Life project ‘Cut out for the future!’ is developing a novel assay (MeD-seq technology) for genome-wide DNA methylation profiling in colon and cervical cancer. This new technology will help to understand the role of DNA-methylation in the pathogenesis of cancer, and may ultimately improve the ability to predict disease progression and treatment outcome in colon and cervical cancer and potentially a variety of other cancers. Due to its unique features epigenetic technology - uncovering potentially modifiable risk factors at high resolution and very low cost - may increase individual autonomy, health and wellbeing by offering personalised preventive interventions. However, these features also give rise to pressing ethical, legal and societal issues regarding autonomy, informed consent and unsolicited findings, harms & benefits of screening tests, privacy, personal responsibility and solidarity.
Through close cooperation with the BBoL project, the CGP will identify and address ethical, legal and societal issues arising in the early phase of research and development of MeDseq technology. Moreover, we will anticipate and explore issues that may arise in the future when epigenetic technologies may be introduced into the domain of population screening. We will develop practical guidelines to help investigators, test developers and policy makers to consider these issues in the phase of research & development and in anticipation of its potential implementation in population screening.
Close2020 - 2022
Organisme subventionnaire: Génome Canada
In response to the ongoing COVID-19 pandemic, CGen has received federal funding to sequence the genomes of thousands of Canadians, in order to better understand the variable clinical response to COVID-19, and share resulting genomic and sequencing data through the HostSeq databank. In doing so, HostSeq will leverage existing biobanking and sample collection efforts, as well as invite interested researchers to launch their own site-specific recruitment protocols to contribute to this Canadian COVID-19 resource. The CGP developed a governance framework for the HostSeq databank, which identifies ethical, operational and oversight mechanisms governing the databank. Additionally, the CGP has prepared a list of core consent elements to assist investigators in sites across Canada in collaborating in this effort and submitting their local projects to their research ethics committees or for determining the adequacy of already-existing projects to contribute to this effort. The CGP team will also perform a pre-assessment of existing informed consent forms of contributing collections in order to assess their compatibility with the HostSeq core consent elements (or identify items that may impede use, such as data storage limitations or international sharing limitations) and will provide ongoing policy consultation to the HostSeq databank.
Close2008 - 2012
Organisme subventionnaire: European Commission under the 7th Framework Program
The ENGAGE consortium unites 22 research organizations and two companies from the biotechnology sector to improve interoperability in some of the most complete cohorts in Europe. ENGAGE aims to translate the richness of information obtained from some of the most important genetics and genomics research projects on European cohorts (and others) to information relevant to clinical applications. In order to do so, ENGAGE is regrouping close to 80,000 association studies of genomic characteristics to identify new medical susceptibility variants that are presently unidentifiable through individual studies. The CGP specifically addresses societal issues raised by molecular epidemiological studies that translate retrospective data and analysis.
1998 - 2002
Organisme subventionnaire:
Conseil de recherches médicales du Canada (CRM)
Ce projet de recherche propose une analyse critique des divers processus d'évaluation éthique de la recherche en génétique humaine. Nous nous concentrons tout particulièrement sur deux éléments : le consentement du participant (identification des éléments du consentement propres à la génétique humaine ou susceptibles d'être standardisés) ainsi que l'évaluation continue et la surveillance de la recherche à la suite de son approbation par un comité d'éthique de la recherche (éléments nécessaires à la surveillance des projets de recherche en cours et des échantillons d'ADN mis en banque). Ce projet permettra de formuler des propositions d'interprétation et d'application à l'intention des comités d'éthique à la recherche.
Close2011 - 2012
Organisme subventionnaire: Commission européenne
FORGE Canada (Finding of Rare Disease Genes) is a national consortium of clinicians and scientists using next-generation sequencing technology to identify genes responsible for a wide spectrum of rare pediatric-onset disorders present in the Canadian population. The Consortium brings together clinicians from all 21 Clinical Genetics Centres (representing every province) and internationally-recognized Canadian scientists with expertise in gene identification, with the infrastructure of the Genome Canada Science and Technology (GC S&T) Innovation Centres. International collaborations have been established with clinicians in 16 countries. Two nation-wide requests for proposals have resulted in 175 disorders that met FORGE criteria; 70 of these rare disorders have been selected for study over the 18 months of this project. These disorders range from those affecting single families, to disorders with 20+ patients from across Canada and internationally recruited through the FORGE network. We are establishing a national data coordination centre to streamline and improve existing large-scale sequence analysis tools and our GE3LS team is working toward national ethical guidelines for analyzing sequence data from entire genomes and for sharing results with families. Gene discoveries made by the FORGE Canada Consortium will have immediate and long-term benefits for the health of Canadians through translation to diagnostic tests, including the development of new methodologies and algorithms for the use of this technology. Within the first three months, we have identified 9 genes; 6 of these are novel genes that were previously not linked to human disease thereby providing insight into the molecular pathogenesis of these disorders. Successful completion of the activities of the FORGE Canada project will yield a coordinated and sustainable Consortium focused on the investigation of the genetic basis of human disease.
2012 - 2017
Organisme subventionnaire: Institut de recherche en santé du Canada (IRSC)
As our understanding of diseases and how to treat them evolves, so too must our decision making procedures for providing fair and cost-effective treatments for those living with an illness. Today, one area of policy and decision making in particupal lags behind, that for treating rare diseases. At present there is no policy framework to help decision makers navigate the complex factors involved when making decisions about pyaing for orphan drugs. This project brings togeth a multidisciplinary team of experts in matters relating to treatment for rare diseases, and will incorporate input from the public and key stakeholders to develop such a framework. It will facilitate priority settings for orphan treatment decisions constrained by a limited budget, that considers the relevant developmental, clinical and economic factors and ethical principles, as well as being consistent with the values of society at large.
Close2011 - 2016
Organisme subventionnaire: Networks of Centres of Excellence (NCE)
International initiatives are emerging to address harmonization and standardization processes for SCR and banking (e.g. International Society for Stem Cell Research (ISSCR) and the International Stem Cell Banking Initiative (ISCBI)). Until recently however, these efforts adopted an ‘embryo-centric’ approach, leaving behind other timely and promising sources (e.g. induced pluripotent stem (iPs) cells, cells derived from placentas, etc.).
While certain socio-ethical and legal (ELSI) concerns are specific to the nature of SCBs, can they thrive by applying the lessons learned in biobanking generally? To answer this, we will examine the current national and international SC banking landscape against the biobanking models for human tissues generally, with a view to evaluating existing governance, commercialization and regulatory frameworks and to proposing policy recommendations to increase the upstream understanding of the factors which encourage or hinder SC translation. We will develop "international governance models" and a "Points to Consider" thereby providing a wide range of stakeholders and receptors (e.g. researchers, SC bankers, policy-makers and the general public), with analyses, strategies and solutions for moving towards translational SCR within Canada and on the global stage. Furthermore, we will build capacity by training and mentoring future ELSI researchers.
Close
2010 - 2014
Organisme subventionnaire:
From the Lab to the Clinic: ELS Issues in Cancer Stem Cell Research is a project key to a larger Cancer Stem Cell Consortium (CSCC) funded initiative that aims to identify, characterize and develop methods of destroying leukemia stem cells (LSC). This latter research project involves three key phases of the innovation process: the use of a large tissue bank (basic research), the engagement of industry partners (commercialization) and the development of valuable therapeutics (translation) for patients with intractable leukemia. The ELS initiative led by HeaLS Research Director Timothy Caulfield explores the ethical, legal, social and policy issues affiliated with each realm of research associated with the innovative process. The team will be investigating ELSI challenges that characterize tissue banking and the commercialization process, in addition to those associated with the marketing of therapies. This latter component is being done through the lens of medical tourism.
Close2016 - 2018
Organisme subventionnaire:
The 2012 Genome Canada Large-Scale Applied Research Project Competition, Genomics and Personalized Health (GAPH), funded 17 projects. Each project integrates technology assessment and social science and humanities research under the banner of the signature Genome Canada GE3LS initiative (i.e. Genomics and its Ethical, Environmental, Economic, Legal and Social aspects).
In 2016, Genome Canada announced funding for a network to bring together GE3LS researchers from all 17 projects. The Network will enable the projects to share best practices; improve and prime future collaborative research; accelerate the progress to market of GAPH technologies; and maximize the impact of investment in the GAPH projects.
The Network will address four priority GE3LS themes: research ethics review; health economics and health technology assessment; knowledge transfer and implementation in health systems for ‘omics technologies; and intellectual property and commercialization.
This $2 million initiative is designed to accelerate the translation of research results into practical applications in healthcare for the benefit of Canadians. The Government of Canada, through Genome Canada, is investing $1 million in the Network, with the balance of funding to be secured from co-funders.
Objectives for each Network theme were outlined by GE3LS and science representatives from each of the 17 projects at a workshop in April 2015. A Network Management Team (Network co-leads and theme leads) will monitor progress on each objective.
By identifying and directing research to overarching issues that emerge from the GE3LS components of the 17 projects, the Network will accelerate their common goal of transforming research results into practical applications adopted by health systems for the benefit of patients.
2018 - 2022
Organisme subventionnaire: Genome British Columbia
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 - 2019
Organisme subventionnaire:
As our scientific understanding of intersex conditions increases, and as we increase the frequency of testing that can detect intersex conditions prenatally via genetic testing, we will increase awareness of intersex conditions in otherwise asymptomatic individuals. As is true of other biological differences with the potential for prenatal diagnosis, this has the potential to increase pathologization, particularly given the option to terminate affected pregnancies. Genetic counselling is one avenue through which parents might be helped to understand the full spectrum of intersexuality and realistic expectations for their children. Despite a pressing need, policies and regulations for genetic testing and genetic counselling in the context of intersex conditions are severely lacking, and there has not been a commensurate rise in training and education for genetic counselors on this subject. Of the five genetic counseling training programs available in Canada, two are currently located in Quebec, at McGill University and Université de Montréal. For this research, we investigated the training available for genetic counselors on intersex conditions, as well as the content of genetic tests that permit testing for intersex conditions. Simultaneously, we undertook a scoping review of existing literature and applicable policy recommendations on the communication of prenatal test results involving intersex conditions to parents. Out of this, we have developed a discussion paper drawing attention to the implications of the rise of prenatal genetic testing for intersex individuals.
Close2001 - 2002
Organisme subventionnaire:
Department of Energy (United States)
Ce projet de recherche étudie la question à savoir si certaines limites devraient être imposées à l'utilisation de l'information génétique par les assureurs pour fins de classification du risque et d'évaluation des primes en matière d'assurance vie. Cette étude propose une analyse et une recherche intégrant à la fois le droit, la médecine, la sociologie et la bioéthique.
L'équipe du CRDP contribue au projet par le biais d'une étude internationale comparée des différentes approches normatives face aux craintes d'utilisation abusive de l'information génétique par les compagnies d'assurances, notamment en Europe et au Canada.
Les approches adoptées et proposées dans le monde offrent un impressionnant spectre de solutions passant de la prohibition législative, au moratoire, à l'autorégulation et au système de plafonnement. Alors que l'Europe se dirige vers un système social unique, les forces et les faiblesses de ces différentes approches méritent un examen approfondi, puisqu'elles peuvent également servir d'exemples pour l'élaboration de normes futures.
Close2007 - 2008
Organisme subventionnaire: Génome Canada
Le projet Génétique du diabète sucré de type
2004 - 2007
Organisme subventionnaire: Ministère délégué à la recherche, action concertée incitative internationalisation des sciences humaines (France)
L’objectif général de ce projet est de constituer un cadre de travail et de construire une problématique partagée entre 6 équipes sur le thème Génétique humaine en population et en santé publique: analyse multidisciplinaire et comparaison internationale des contextes normatifs et des pratiques, afin de pouvoir déposer en commun, en 2007, une demande en réponse à un appel d’offre international. Les objectifs spécifiques comprennent :
• L’approfondissement de la connaissance mutuelle des équipes
• La définition plus fine d’une problématique commune orientée sue les normes, valeurs et pratiques dans le domaine de la génétique en santé publique
• Le choix des terrains et des méthodologies qui maximise l’exploitation du caractère international et pluridisciplinaire du consortium
• L’extension éventuelle du consortium
• La préparation et le dépôt du dossier.
Close
2018 - 2021
Organisme subventionnaire: 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.
Close2006 - 2008
Organisme subventionnaire: Génome Québec
Par le biais d’articles et de rencontres GE3LS, le projet a pour objectif d’identifier les enjeux sociaux, éthiques et juridiques sous-tendant des questions telles : Comment mettre en balance les intérêts des populations « à risques » de maladies transmissibles ou infectieuses et la confidentialité de l’information génétique des individus ou de la communauté et la sécurité des de données crées? Ces banques de données peuvent-elles être utilisées dans l’intérêt public pour le bien commun. Cette recherche sera aussi alimentée par les résultats d’entrevues réalisées auprès de professionnels de la santé et de décideurs, par un forum des décideurs, par la contribution du public via un forum citoyen ainsi que par deux symposiums internationaux, le premier regroupant des « consommateurs-citoyens » qui sont considérés comme stakeholders dans les modèles de participation citoyenne et le deuxième rassemblant des professionnels de la santé impliqués dans le dépistage des nouveaux-nés. Le projet se conclura sur une conférence consensuelle portant sur un document « Encadrement normatif: recommandations» développées avec les collaborateurs nationaux et internationaux. Le document « Encadrement normatif : recommandations » traduira les connaissances en génomique en une conscientisation pour la prévention de maladies et la promotion de la santé.
Close2002 - 2005
Organisme subventionnaire:
Valorisation recherche Québec (VRQ)
Les avances technologiques récentes réalisées en génomique et en protéomique, permettent aujourd'hui d'identifier les causes de diverses maladies digestives. Il est apparent qu'une meilleure compréhension de ces causes favorise le développement de nouveaux outils diagnostiques, de traitement précoce et des mesures de prévention. Cela dit, il faut être prudent vis à vis la portée de la médecine préventive puisque les recherches génétiques destinées à identifier des gènes et à créer des profils génétiques soulèvent plusieurs questions sur le plan social, éthique et juridique.
Ce projet de recherche multidisciplinaire aura donc comme mission d'identifier des polymorphismes fonctionnels; d'établir la carte protéomique de la cellule intestinale saine; de déterminer la relation génotype-phénotype cellulaire et d'évaluer leur impact clinique par des études longitudinales sur les enfants et familles atteintes de maladies reliées au tube digestif.
Dans le cadre de ce projet, notre équipe examinera les questions éthiques soulevées par la recherche génétique et les tests génétiques prédictifs sur les enfants, les nouveau-nés et les adolescents. L'équipe sera responsable entres autres de l'élaboration d'un formulaire de consentement spécifique à la génétique destiné à l'enfant ou à l'adolescent et l'élaboration des outils d'information génétique tel qu'un dépliant sur les maladies à développement tardif et/ou certaines maladies gastro-intestinales (incluant les informations sur les risques psychosociaux). Par ailleurs, l'équipe fera l'analyse des politiques éthiques et des normes légales existantes à l'échelle internationale sur 1) les aspects relatifs à la divulgation de l'information à l'enfant et à la famille, dont les frères et sœurs; 2) les aspects relatifs à la communication des résultats aux porteurs à l'égard des résultats incidents ou inattendus et; 3) les aspects quant à la conservation et l'utilisation des échantillons.
Il est également prévue de constituer un module PediaGen dans la Banque de données HumGen pour permettre l'accès à l'information et pour créer un réseau d'échange entre les chercheurs et personnes intéressées.
Close2009 - 2011
Organisme subventionnaire: Agence de santé publique du Canada
GRaPH-INT est une collaboration internationale d’individus et d’organisations avec un intérêt pour la génomique en santé publique. Le réseau favorise la transformation de connaissances et de technologies en politique publique et en programmes et services pour le bénéfice de la santé publique. GRaPH-INT est à la fois un réseau ainsi qu’un projet avec des objectifs interdisciplinaires qui supportent ce dialogue.
Le Centre de génomique et politiques est commandé par l’Agence de la santé publique du Canada afin d’agir en tant que secrétariat international du réseau.
2014 - 2015
Organisme subventionnaire:
This project aims to compare and analyze national and international privacy frameworks applicable to genomic databases and biobanks. A series of articles will be prepared on the privacy frameworks in place in a wide sample of countries and regions. Each article will survey the privacy instruments and legal and policy materials in place in a given jurisdiction, and will provide a legal analysis and critical evaluation of those instruments and materials. The general political and research contexts of the country or region will be introduced, and a description of its biobanking ecosystem will be provided. This will be followed by a comprehensive description of the legal and regulatory privacy framework applicable to genomic databases / biobanks in the country or region. Each article will conclude with a critical evaluation of the national privacy framework as it relates to genomic research privacy, security, and governance. The project will have an International Advisory Board (IAB) consisting of three internationally recognized scholars to provide oversight and guidance of the project throughout its development and advancement. The series of articles will be published in two dedicated special issues in the Journal of Law, Medicine & Ethics.
Close2018 - 2019
Organisme subventionnaire:
As part of the Open Science Policy Knowledge Mobilization project, P3G2 has developed an international comparative research brief with a focus on consent. It also designed a consent form seeking to increase patient awareness of and promote data sharing according to open science principles and in line with international best practices.
Close2018 - 2022
Organisme subventionnaire: Institut de recherche en santé du Canada (IRSC)
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 - 2022
Organisme subventionnaire: Institut de recherche en santé du Canada (IRSC)
The advanced 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 United Kingdom, 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, and 2) addressing issues of consent and the need to re-contact child participants once they become adults.
Close2008 - 2011
Organisme subventionnaire: Institut de recherche en santé du Canada (IRSC)
Ce projet propose une étude empirique de deux juridictions canadiennes, l’Ontario et le Québec, qui ont adressé le défi du dépistage néonatal de façon différente. Les principaux objectifs de ce projet sont : (1) d’obtenir de l’information empirique et théorique eu égard aux perceptions et attentes des parents et des professionnels de la santé concernant la gouvernance des programmes de dépistage néonatal, l’option-provision, et la délivrance de l’information et/ou support aux parents; (2) de développer et entreprendre la validation initiale d’un outil d’aide pour les parents; et (3) d’explorer des moyens d’accroître la capacité des services publics de santé et celle des professionnels cliniques de la santé, de fournir l’information et le support aux parents avant les procédures de dépistage. De plus, ce projet comprend une revue de la littérature sur : (1) le choix éclairé en matière de dépistage néonatal; (2) les perceptions concernant l’entreposage et l’utilisation secondaire des échantillons sanguins séchés des nouveau-nés; et (3) les rôles et responsabilités des professionnels cliniques et de la santé dans l’apport d’information et de support décisionnel aux parents.
Close2013 - 2017
Organisme subventionnaire:
This project intends to implement two novel tests in the healthcare system: 1) a chemogenomic model for the development of a prognostic test in Acute Myeloid Leukemia (AML); and 2) an integrated detection kit for Minimal Residual Disease (MRD). Our first objective is to highlight the strengths and weaknesses of Canadian federal and provincial regulatory test approval models. To this end, we will undertake a comparative analysis of US and EU models. Our second objective is to develop recommendations based on an ethical and legal analysis of the duty to inform in the context of lab directors (i.e., whether these directors are under an obligation to inform treating physicians of clinically-valuable information resulting from AML research).
Close2012 - 2017
Organisme subventionnaire: Institut de recherche en santé du Canada (IRSC)
This project proposes an integrative Epigenomic Data Coordination Centre at McGill, which will be a national hub to support data collection, processing, storage and dissemination for projects funded under the CEEHRC initiative and facilitate integration with the IHEC. The ouctome will include data pipelines and tools using standardized formats and vocabularies for verification, validation, and analyses across the CEEHRC network. The EDCC McGill will also develop a framework that leverages Compute Canada national resources to supoort large-scale processing, sharing and visualization of epigenomics data. The platform will enable epigenetic researchers on a national level to query and exploit this valuable research.
Close2012 - 2017
Organisme subventionnaire:
This project proposes an integrative Epigenomic Data Coordination Centre (EDCC) at McGill, which will be a national hub to support data collection, processing, storage, and dissemination for projects funded under the Canadian Epigenetics, Environment and Health Research Consortium (CEEHRC) initiative and facilitate integration with the International Human Epigenome Consortium (IHEC). Protection of data confidentiality will be paramount, and all steps associated with data flow within the CEEHRC network will adhere to current IHEC policy through a reliance on two-tier classification of datasets, where data that cannot be aggregated to generate a dataset unique to an individual is made publicly accessible, while access to data associated with a unique (albeit not directly identifiable) person is controlled. A Centre-specific data access agreement has been developed to ensure that researchers adhere to standards of confidentiality and maintain good IT practices. Developments in the bioinformatics, IT security, scientific, and policy literature are monitored to ensure that the current classifications for “open” or “controlled” data continue to protect patients. Both the EMC and EDCC projects also involve the development of and support for a bioethics workgroup for the IHEC.
Close2001 - 2005
Organisme subventionnaire: Institut de recherche en santé du Canada (IRSC)
Le cancer du sein est un exemple pertinent représentatif de la croissance rapide du domaine des tests de susceptibilité pour des maladies multifactorielles communes. Les connaissances dans le domaine de la génétique du cancer du sein ont le potentiel pour permettre la détection précoce, la prévention et le traitement de ce type de cancer. Cependant, l'information génétique peut révéler beaucoup sur les individus et leurs familles, et cette information pourrait potentiellement être mal utilisée.
Les objectifs de cette proposition sont les suivants :- Étudier les implications légales, sociales et éthiques de trois dilemmes émergeants : (1.1) recherche génétique et épidémiologie génétique utilisant les registres de cancers et les banques de tumeurs; (1.2) secret professionnel et respect pour les droits des individus et des familles; et (1.3) inquiétudes du public à propos de la discrimination génétique et particulièrement de l'accès à l'assurance.
- Promouvoir l'éducation des professionnels et des décideurs.
- Soutenir l'équipe de recherche de INHERIT (Interdisciplinary Health Research International Team on Breast Cancer Susceptibility) en répondant aux questions sociales, légales et éthiques soulevées par des projets spécifiques sur le cancer du sein.
2009 - 2019
Organisme subventionnaire:
The International Cancer Genome Consortium (ICGC) represents international cancer research projects who share the common aim of elucidating genomic changes in a range of cancers. ICGC has gathered mass volumes of data since its inception culminatory in the PCAWG publication in Nature (February 5, 2020). Data is shared with 1300 researchers from 37 countries. The CGP houses the consortium’s Data Access Compliance Office (DACO). International researchers have obtained access to controlled data for use in genomics, bioinformatics, and related research. The CGP manages the data access process in order to ensure that cutting edge cancer research progresses efficiently and with as broad a reach as possible. To date, DACO has processed over 2000 applications for ICGC Controlled Data Access (including resubmissions and renewals). This project has been realized at the CGP in collaboration with members of the P3G/P3G2 project.
Close2009 - 2013
Organisme subventionnaire: Ontario Institute for Cancer Research (OICR)
Le International Cancer Genome Consortium (ICGC) est organisé afin de lancer et cordonner un nombre important de projets qui ont comme but commun d’élucider de façon compréhensive, les changements génomiques, présents sous plusieurs formes contribuant au fardeau de maladies présentes dans les populations du monde.
Le Data Compliance Office (DACO) est responsable de l’administration des demandes d’accès aux données contrôlées, et recueillies par le ICGC. DACO est sous le contrôle à la fois du Data Coordination Centre et du International Data Access Committee. Ses objectifs sont de faciliter le transfert de données de façon éthique, efficace et responsable, aux membres de la communauté scientifique qui se soumettent aux termes et objectifs du consortium.
2012 - 2015
Organisme subventionnaire: Institut de recherche en santé du Canada (IRSC)
La collaboration scientifique est clé à la mondialisation de la recherche. Cet élément est essentiel pour la faisabilité de tout projet de collaboration international. Comme le International Stem Cell Forum (ISCF). Le ICSF est composé de vingt-deux partenaires et instituts subventionnaires, provenant de partout à travers le monde. L’ISCF rencontre de nombreuses épreuves concernant la régulation et les politiques contradictoires, adoptées par ses partenaires, traitant de l’échange de matériels et de données. Ces structures divergentes en matière de politique et de régulation gouvernantes, nuisent à l’entreprise de la recherche sur les cellules souches (i.e. l’obtention, la dérivation, la mise en banque, la distribution et l’utilisation de lignées de cellules souches) et donc, elles pourraient empêcher la collaboration au niveau national et international.
La création du Ethics Working Party (EWP) a été menée par les collaborateurs canadiens du International Stem Cell Forum, soient les Instituts de recherche en santé du Canada (IRSC). Le EWP est composé d’experts indépendants dans le milieu, qui sont nommés par chaque organisme membre du Forum. Le comité est présidé par Dr. Bartha Maria Knoppers, et son secrétariat se situe au Centre de génomique et politiques (CGP) à la Faculté de médecine de l’Université McGill. La fonction première du EWP est d’aider les pays membres à entreprendre la recherche sur les cellules souches dans un contexte éthique transparent et réfléchi. Le EWP cherche à identifier des stratégies potentielles favorisent l’intégrité scientifique et éthique de la recherche dans un contexte global.
2005 - 2006
Organisme subventionnaire: Réseau des cellules souches
Le présent projet s’appuie sur des recherches en cours au Centre de recherche en droit public (CRDP) et au Health Law Institute (HLI) portant sur les conséquences scientifiques, éthiques et réglementaires de la mise en banque du sang ombilical. Nous avons l’intention d’inviter à un atelier d’un jour des représentants d’organismes publics (Héma-Québec, Alberta Cord Blood Bank, Société canadienne du sang, Victoria Angel Registry of Hope) et d’entreprises de banque de sang ombilical privées (Cells for Life, InSception BioSciences, Lifebank, etc.), ainsi que des médecins transplantologues, des chercheurs qui étudient le sang ombilical, des représentants des organismes internationaux chargés des lignes directrices régulant le prélèvement et l’utilisation du sang ombilical (p. ex., la Foundation for the Accreditation of Cellular Therapy, FACT) ainsi que les intervenants clés de Santé Canada. La documentation contextuelle pertinente sera diffusée avant la réunion.
Le but poursuivi consiste à mettre sur pied un groupe de travail qui aborderait les aspects éthiques des banques de sang ombilical publics et privés et proposerait un cadre réglementaire canadien efficace aux décideurs.
2014 - 2014
Organisme subventionnaire:
In Canada, Citizenship and Immigration Canada (CIC) representatives increasingly resort to DNA testing to confirm biological filiations in the realm of immigration sponsorship, specifically concerning immigrants originating from Africa, Asia, and the Caribbean. This project proposes a Canadian-specific analysis to: 1) determine the legal and ethical issues arising from the use of DNA testing in the context of immigration sponsorship in Canada; and 2) propose a legislative and political reform in response to this emerging problematic.
Close2006 - 2012
Organisme subventionnaire: Institut de recherche en santé du Canada (IRSC)
L'étude MIREC est une étude quinquennale auprès d'environ 2 000 femmes de Vancouver, de Calgary, de Winnipeg, de Sudbury, d'Ottawa, de Kingston, de Hamilton, de Toronto, de Montréal et de Halifax. Ces femmes, recrutées dans le premier trimestre de leur grossesse, seront suivies jusqu'à l'accouchement, puis jusqu'à huit semaines post-partum. Les objectifs principaux de l'étude sont les suivants :
- évaluer dans quelle mesure les femmes enceintes et leurs enfants sont exposés aux substances chimiques ainsi qu'à la fumée du tabac;
- évaluer, le cas échéant, les risques de santé liés à la grossesse découlant de l'exposition à des métaux lourds (plomb, mercure, cadmium, arsenic et manganèse);
- mesurer les niveaux, dans le lait maternel, de certains éléments bénéfiques (nutriments et éléments immuno-protecteurs) ainsi que de substances chimiques de l'environnement.
2004 - 2005
Organisme subventionnaire: Institut de recherche en santé du Canada (IRSC)
La mission de ce projet est de brosser un tableau des pratiques actuelles ainsi que des enjeux sociaux, éthiques et légaux qui sous-tendent le consentement, la conservation et l’accès aux échantillons laissés suite aux programmes de dépistage des nouveau-nés. Par ce projet, nous voulons atteindre les objectifs suivants : - Réviser les politiques et les pratiques internationales entourant la conservation des échantillons de sang séché - Sonder les pratiques d’entreposage des échantillons de sang séché des laboratoires de dépistage au Canada - Revisiter les lois et arrêts pertinents afin de vérifier si la conservation, l’accès et l’utilisation des cartes Guthrie ont pu contrevenir aux droits de propriété et de vie privée ou mener à des pratiques discriminatoires. - Mettre en place un Task Force multidisciplinaire sur le dépistage chez les nouveau-nés - Préparer un atelier faisant état des pratiques d’entreposage dans les programmes de dépistage chez les nouveau-nés
Close2004 - 2005
Organisme subventionnaire: Institut de recherche en santé du Canada (IRSC)
Les avancées scientifiques dans le domaine de la génétique et de la génomique créent un nouveau paradigme qui pourrait transformer les soins de santé. La pharmacogénomique a pour promesse de donner la dose appropriée d’un médicament, au bon patient, au bon moment. Les enfants risquent cependant d’être exclus des bénéfices potentiels de cette nouvelle approche thérapeutique en partie à cause des enjeux sociaux, éthiques et juridiques soulevés par leur participation aux essais cliniques en pharmacogénomique. Afin d’aborder ces questions, le présent projet à pour objectifs : (1) l’identification, à l’aide de l’analyse de la littérature et des documents normatifs nationaux, régionaux et internationaux, des enjeux juridiques, éthiques et sociaux de la recherche en phamacogénomique impliquant des enfants; (2) l’identification des enjeux critiques par l’intermédiaire d’entrevues qualitatives auprès des chercheurs en phamacogénomque; (3) l’étude des enjeux identifiés; (4) l’ébauche de recommandations destinées aux professionnels de la recherche, aux comités d’éthique de la recherche et aux décideurs.
Close2004 - 2007
Organisme subventionnaire: CRSH - Conseil de Recherches en Sciences Humaines du Canada
Étude des rôles et des pouvoirs de l’État pour assurer la protection de la santé publique lorsqu’un agent infectieux d’origine animal menace l’être humain. L’analyse portera sur les tensions et complémentarité entre les droits individuels et les droits collectifs dans les pouvoirs qui sont conférés à l’état et sur les actions, réactions et interactions de l’état lors de la survenue d’une menace à la santé publique.
Close2019 - 2020
Organisme subventionnaire: Fonds de recherche du Québec - Santé (FRQS)
Epidermolysis Bullosa (EB) is a genetic disease manifested by a lack of adhesion between the dermis and the epidermis. It causes detachment of the mucous membrane and epidermis, which can lead to serious complications such as ulcers, infections and cancer (carcinoma). Currently, the treatments offered are palliative, mainly with bandages to protect epithelial wounds. EB is characterised by mutations in different genes. The aim of the project is to develop an effective gene therapy treatment for two types of EB: dystrophic EB (D) and junction EB (J). Skin substitutes (reconstructed skin) will be produced from EB patient cells, grown in vitro and corrected by gene therapy. The efficacy of this treatment will be tested on reconstructed human skin in the laboratory. The CGP will be reviewing ethical and legal issues associated with this project.
Close2014 - 2016
Organisme subventionnaire:
The project’s main objective is to study the legal and ethical issues that arise from the use of Whole Genome Sequencing (WGS) in minors. Our results will contribute to: 1) developing two policies on the use of WGS in minors – one for the research setting and the other for the clinical setting; and 2) elaborating a prospective analysis detailing the implications associated to the eventual use of WGS in paediatrics within the realm of direct-to-consumer (DTC) testing and neonatal screening.
Close2005 - 2008
Organisme subventionnaire: Commission européenne
L’objectif de ce projet est d’analyser en profondeur les problèmes fondamentaux de la recherche sur les chimères et les hybrides. La recherche à l’intérieur du projet prendra la forme de rapport, de compte-rendu d’ateliers, d’ateliers et de conférences afin de compiler les stratégies, les concepts et les suggestions en matière de recherche et de prise de décision.
Close2001 - 2009
Organisme subventionnaire: Chaire de recherche du Canada en droit et médecine
L'Institut International de Recherche en Éthique Biomédicale (IIREB) est un institut sans mur, qui vise, d'une part, la collaboration et la coopération internationale dans le domaine de la recherche en éthique biomédicale et d'autre part, la mise sur pied d'un système de réseautage international, à la fois interdisciplinaire et inter-institutionel. L'IIREB a une mission éducative puisque par des stages elle permettra aux jeunes chercheurs d'acquérir plus qu'une expérience de travail. L'IIREB entend aussi apporter à la société une contribution particulière dans le domaine de la recherche en éthique biomédicale en faisant bénéficier la collectivité de la réflexion menée dans le cadre de ses activités. L'Institut se veut donc un institut à vocation internationale mettant en œuvre un partenariat multilatéral.
Les fonctions de l'IIREB :
- une fonction structurante et de coordination par l'interconnexion de réseaux et de partenaires et par des appuis à des échanges internationaux ;
- une fonction mobilisatrice en stimulant des interactions dynamiques entre les différents partenaires ;
- une fonction de formation et d'enseignement en appuyant la mobilité étudiante. Le facteur déterminant, c'est d'avoir des étudiants boursiers pour assurer la relève. Pour ce faire, il faut cibler la clientèle d'étudiants qui offre le plus de potentiel pour obtenir des retombées optimales ;
- une fonction de sensibilisation du public en mettant en place des mécanismes de diffusion et de vulgarisation des travaux de l'IIREB et en créant le plus rapidement un site propre à l'IREB et des adresses de courriers électroniques propres. Ces infrastructures permettront d'assurer la visibilité de l'IIREB.
2011 - 2012
Organisme subventionnaire: Institut de recherche en santé du Canada (IRSC)
Making Connections is a network that brings together expert scholars to address issues surrounding the governance of biobanks. In 2011, the fourth Making Connections’ workshop was held in Montreal on October 10-11, just prior to the International Congress of Human Genetics Meeting. The workshop had four objectives:
- Continue the expansion of the international biobanks governance network.
- Examine possible pathways towards an effective and proficient use of biobanks in translational research and clinical applications.
- Publish a guidance document on translational challenges and solutions for national and international stakeholders and widely disseminate it.
- Identify opportunities for funded research and policy project.
A policy statement on the return of research results and incidental findings in population studies - developed in collaboration with the Public Population Project in Genomics - was discussed at the meeting and is published by P
3G.<http://www.p3g.org/secretariat/news/P3G%20 Return%20of%20Results.pdf>
2008 - 2010
Organisme subventionnaire: Institut de recherche en santé du Canada (IRSC)
Ce projet examine comment les infrastructures publiques (Référentiels d’ADN) peuvent utiliser une entente uniforme de transfert de matériel (« Uniform Material Transfer Agreement », UMTA) afin de : 1) mieux définir les droits des participants, des organismes subventionnaires ainsi que des chercheurs potentiels; 2) maintenir l’approche de source ouverte des infrastructures ayant une subvention publique; 3) maintenir le potentiel brevetable et de licence de la propriété intellectuelle résultante; 4) définir clairement les limites de la recherche à la lumière de l’utilité publique et du consentement éclairé du participant; 5) établir des modalités internationale et nationale pour le transfert des échantillons biologiques et des données; 6) définir les risques et responsabilités engendrés. Une analyse adéquate de ces aspects pourrait révéler que les MTAs peuvent, de façon provisoire, et en l’absence de législation spécifique, être utilisés comme un outil flexible et efficace dans le contexte de l’infrastructure de la recherche, en améliorant la prévisibilité, la protection du publique (et de façon incidente, la confiance), diminuer les délais de négociation et mettre en place des standards importants dans le domaine. Il est espéré que ces standards pourront de plus influencer le secteur privé.
Close2011 - 2013
Organisme subventionnaire:
MICYRN brings together the 17 Canadian academic child/ child-maternal health centres and research institutes in a multi-disciplinary national initiative committed to removing barriers and building capacity for the conduct of safe and high quality health research. The CGP is involved in several projects with MICYRN, including: Practices for Health Research Involving Children and Adolescents, Paediatric Consent Best Practices, Research Harmonization, Newborn Bloodspots/Biobanks, Newborn Screening/WGS, and creating policy tools for a Paediatric Biobank Research Platform. • Developing Best Practices in Pediatric Consent Forms: The analysis provides valuable insight and evidence into how consent forms address current ethical issues, reducing gaps and facilitating harmonized, yet contextualized, approaches to pediatric health research ethics. • Evaluating a novel model for Canadian National Federated Ethics Review: Expert review of 5 new research protocols in order to test new ways of doing ethics review for pediatric research. • P3G International Psediatric Biological Research Platform: The Pediatric Platform is meant to develop an online platform, hosted by P3G, providing research tools for researchers and REBs concerned with pediatric biobanking. Using model documents in informed consent, data sharing, and biobank governance, the platform facilitates harmonization, provides practical value for researchers, works to improve ELSI management in pediatric biobanking, and facilitates REB review.
Close2018 - 2022
Organisme subventionnaire: Génome Canada
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.
Close2004 - 2009
Organisme subventionnaire: Institut de recherche en santé du Canada (IRSC)
L’objectif principal de ce projet est de prévoir les enjeux éthiques, économiques, environnementaux, juridiques et sociaux pouvant être soulevés par l’utilisation des technologies de médecine régénérative et ce, afin de maximiser les bénéfices et de minimiser les risques liés à la recherche médicale et l’application en clinique.
Close2002 - 2003
Organisme subventionnaire:
L'institut Seaver
Ce projet, financé par l'Institut Seaver, se concentrera sur le développement et la collection de cas d'études réels recensés à travers le monde et portant sur des modèles de prise de décisions éthiques dans les entreprises de biotechnologies. L'objectif de ce projet est de développer un cadre de travail pour comprendre les facteurs clés qui influent sur l'attention donnée aux aspects éthiques dans une prise de décision stratégique par les entreprises biotechnologiques. Cela, dans le but d'identifier les politiques et pratiques qui peuvent être utilisées pour augmenter la capacité des entreprises à auto-réglementer les composantes éthiques de leurs décisions d'affaires.
Close2012 - 2017
Organisme subventionnaire: Institut de recherche en santé du Canada (IRSC)
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 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 presents 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.
Close2018 - 2019
Organisme subventionnaire:
NAC Bio is a health information company aiming to advance clinical research into the medicinal benefits of cannabis in the treatment of chronic disease and illness, by using the latest developments in data-science, human genomics and digital health. Headquartered in Vancouver, British Columbia, it was founded by National Access Cannabis Corp. and by Dr. Tyler Wish. As part of this project, P3G2 assisted the team in establishing their recruitment process in order to ensure the respect of ethical guidelines. Support on governance, data storage and data sharing issues was also provided.
Close2011 - 2014
Organisme subventionnaire: Génome Québec
The project proposes to develop a prognostic gene signature and validate a "made in Quebec" clinical test for ER-positive breast cancer patients. The ELSI portion of this project, for which the Centre of Genomics and Policy has primary responsibility, revolves around the barriers to the adoption of new technologies into clinical practice. We are focusing first on the educational factors that might limit uptake or understanding of these tests. That is, does the education received by physicians and nurses as part of primary or continuing education curricula adequately take into account the growth of genetic medicine in everyday medical practice? We will also be pursuing a qualitative study beginning in the spring of this year. For this, we will be interviewing or sending questionnaires to clinical care providers to obtain their input on what barriers exist for them, if any, for the use of genetic testing in their practices. From this we hope to develop a discussion paper on barriers to uptake of new genetic technologies, including educational and any other that arise from the qualitative study.
2020 - 2022
Organisme subventionnaire: Conseil de Recherches en Sciences Humaines du Canada (CRSH)
The COVID-19 pandemic has demonstrated the on-going need for scientific cooperation and re- sponse at a global level. Recent research has already brought several vaccines to market, as well as possible therapeutics to combat the disease. COVID-19 specific biobanks and data repositories have been positioned at the forefront of these biomedical developments, providing researchers tools to study the novel virus at unprecedented speeds. Still, important ethical, legal, and social tensions arise between the need for rapid collection and the clinical realities faced on the ground by professionals responsible for both patient care and recruitment into research.
The goal of this project is to provide policy evidence – as well as ethical and legal guidance – to inform newly created COVID-19 research infrastructures. The CGP plans to conduct a comparative analysis of existing COVID-19 international biobanking policies and launch a national survey on the lived experiences of health professionals involved in participant recruitment during the pan- demic. In co-ordination with the Biobanque Que?becoise de la COVID-19 and researchers in the UK, Italy, Australia, South Africa, and Hong-Kong, the CGP will ensure this work can provide objective evidence for policy development.
Close2018 - 2019
Organisme subventionnaire:
Open Science is among the most recent branches of the various open content movements to attract widespread attention and significant investment on both sides of the Atlantic. In Canada, the 2017 launch of the Tanenbaum Open Science Institute came with a commitment to forgo intellectual property claims on the data associated with their research, and otherwise make their data broadly available. These initiatives correspond with the lead-up period to the enforcement of the European Union’s new General Data Protection Regulation (GDPR), whose rules on the transfer of personal data to countries outside the EU are part of a network of data protection frameworks including Canada’s Personal Information Protection and Electronic Documents Act. Because open content movements, including Open Science, have rarely engaged with the implications of data protection on their overarching mission, the risk of contradictory, incoherent, and ill-suited practice and frameworks looms large in this area. The CGP was involved in research aimed at tracing how the values underlying Open Science and data protection might be harmonized in the context of data transfer, and in particular with key transfer frameworks sketched out in the GDPR: adequacy decisions, model contractual clauses, and codes of conduct.
Close2020 - 2022
Organisme subventionnaire: Défense nationale (canada)
Epigenetics refers to heritable or non-heritable changes to the DNA structure and gene activity that can occur in response to exposure to various environmental or social factors. This project aims to identify opportunities and challenges in using epigenetic technologies in the context of defense and security, with a focus on four applications: 1) exposure to nuclear, chemical or biological weapons; 2) epigenetic age (e.g., proving child soldiers’ age through DNA methylation analysis); 3) mental health monitoring (e.g., PTSD); and 4) enhancement of bodily functions (memory, cognition, muscle strength) through epigenome editing.
The CGP has carried out trailblazing research on the opportunities and technical, ethical and legal challenges associated with epigenetics. In this project, the CGP will undertake extensive documentary research (funded research, military directives and orders, laws and government policies) that would yield a peer-reviewed article on epigenetics’ anticipated uses. This research will complement a one-day workshop with US and Canada experts on epigenetics, DARPA researchers in epigenetics and DND/CAF staff. The workshop’s outcomes will be translated into a policy brief and briefings for interested DND/CAF officials, highlighting paths to effectively implementing epigenetic technologies in defense and security contexts.
Close2014 - 2018
Organisme subventionnaire:
The OPTI-THERA project will implement Optimized Therapeutic drug responses and Optimized Theranostics strategies through the creation of a Knowledge and Information Integrating Node (KIIN). The Centre of Genomics and Policy will conduct research concerning: 1) the legal aspects surrounding insurance and the use of genetic information; 2) the role of a trusted third party; 3) the conflict of interest issues in public-private partnerships for personalized medicine. Collaborating closely on this project, the Population Projects in Genomics and Society (P3 G) will: 1) review and amend of the project’s consent forms; 2) provide ongoing ethics support (i.e., ethics approval); and 3) develop policies and procedures (re. clinical assessment and gate keeping functions).
Close2012 - 2013
Organisme subventionnaire: Réseau des cellules souches
The main objective of this project is to develop tools for optimizing access to ethically sourced umbilical cord blood (UCB) for research. UCB is considered a valuable source of stem cells for research and clinical applications. Furthmore, UCB transplantation is standard practice for the treatment of blood disorders and studies suggest their potential use for the development of novel blood and immune-based therapies. Canadian Blood Services (CBS) will establish and operate the national OneMatch Public Cord Blood Bank (OMPCBB) that will be accessible to Canadian and international patients. The OMPCBB will promote efforts that contribute to research and improved clinical care by making non bankable units available for research. In this context, the development of harmonized tools for UCB collection and uses that meets the needs of all stakeholders is critical. In partnership with CBS and other stakeholders, we will develop practical tools to enable ethical provenance of UCB stem cells as well as policy recommendations for UCB research (e.g. informed consent protocols, information pamphlets for donors and ethics review boards) to facilitate the interpretation of ethical guidelines and ensure research is performed within a strong ethical and legal framework.
Close2004 - 2007
Organisme subventionnaire: Génome Canada
L’Équipe GE3DS étudiera les enjeux éthiques, sociaux et juridiques tels que :
• la communication des résultats de recherche aux participants;
• le retrait du consentement pour la mise en banque;
• l’utilisation secondaire des données et commercialisation;
• l’utilisation et partage des données avec des partenaires commerciaux, cliniques ou académiques à l’extérieur du Canada;
• la propriété intellectuelle et banques de données;
• l’impact du recrutement pour la recherche d’enfant atteint d’un retard mental;
• l’impact pour la famille des sujets;
• l’impact au niveau des soins de santé et du counselling;
• l’implication d’adultes sains provenant de diverses origines ethniques.
2007 - 2010
Organisme subventionnaire: Génome Canada
P3G est un consortium international qui vise à pourvoir les différents projet de génétique des populations de ressources, outils et du savoir-faire nécessaires pour parfaire la gestion de données, notamment leur transfert et partage. Son objectif principal est la création d’une base de données commune, publique et accessible. P3G repose sur des principes de transparence et de collaboration. Ce consortium permettra aux quatre projets, et les pays qui accepteront de se plier à ses règles et à sa philosophie, de bénéficier d’un accès horizontal aux données.
Pour plus d’information consulter le: www.p3g.org
Close
2005 - 2009
Organisme subventionnaire: Réseaux de centres d'excellence (RCE)
Le groupe CARENeT-SCN a été mis sur pied avec pour objectif principal d’aller de l’avant dans le domaine de la régénération cardio-vasculaire cellulaire et de concentrer les forces des scientifiques et cliniciens canadiens en modélisation des maladies cardiovasculaires, en biologie des cellules souches et dans l’étude clinique de thérapies cardiovasculaires novatrices Puisqu’on se déplace maintenant du laboratoire au chevet du patient, les enjeux éthiques et juridiques soulevés par les nouvelles thérapies cellulaires doivent faire l’objet d’une réévaluation. Le point central de cette analyse est la sécurité des essais cliniques compte tenu de la demande grandissante pour des thérapies efficaces Le groupe propose de: 1) caractériser les enjeux sociaux, éthiques et juridiques spécifiques aux premiers essais cliniques chez l’humain de nouvelles thérapies cellulaires en médecine régénérative cardiovasculaire et respiratoire; 2) développer des protocoles modèles pour ce type d’expérimentation; 3) se conformer aux exigences du Code civil du Québec.
Close2004 - 2007
Organisme subventionnaire: Ministère des relations internationales (Italie/Québec)
Ce projet vise la mise en place d’une coopération entre le Québec et l’Italie dans le domaine de la bioéthique et la promotion de la recherche interdisciplinaire et interinstitutionnelle en créant un partenariat, un système de réseaux entre des équipes québécoises et italiennes. Cette collaboration prendra la forme d’échange entre chercheurs et entre étudiants des cycles supérieurs. Afin de mener à bien cette collaboration, le projet s’appuiera sur l’IIREB qui réunit des équipes et des ressources de disciplines variées, de diverses origines institutionnelles et de divers pays et qui met en place des projets de partenariat sur des thèmes essentiels dans le domaine de la recherche en éthique biomédicale.
Close2018 - 2022
Organisme subventionnaire: Génome Canada
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.
Close2013 - 2017
Organisme subventionnaire:
The project is designed to significantly extend the benefits of the current highquality population screening program, particularly for younger women (35 to 49) by implementing a risk stratification approach targeting screening at an identifiable subset of women with relatively high risk of breast cancer (BC) who are missed by the current standard age-based screening program. This personalized risk-based approach to breast cancer screening will detect cancers at an earlier stage. Significant socio-economic and health benefits will be achieved since a woman’s survival prospects will be increased and the burden of disease and costs of treatment will be reduced. Knowledge of the genetic basis of BC and its risk factors will allow stratification of individuals into different risk groups for screening and personalized followup with appropriate preventive and clinical measures. However, a strategic approach is needed to facilitate the acceptance and adoption of risk-based stratification BC screening models in clinical settings, healthcare services and policies. At the end of our project we will deliver a web-based risk stratification and communication toolbox for use by health professionals and women to facilitate the implementation of a personalized risk-based approach in BC screening and management.
Close2018 - 2022
Organisme subventionnaire: Génome Canada
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.
Close2001 - 2003
Organisme subventionnaire: VRQ - Valorisation-recherche Québec
Valorisation recherche Québec
On affirme que l'étude de la variation génétique (SNPs) permettra l'établissement de profils individualisés, pour une plus grande efficacité, une plus faible toxicité et un dosage individualisé des médicaments. L'industrie pharmaceutique prévoit combler les besoins des banques d'échantillons par la prise en charge de l'échantillonnage d'ADN lors d'essais cliniques traditionnels. On affirme par ailleurs que cette approche n'a que très peu à voir avec la recherche en génétique classique sur des allèles délétères hautement pénétrants, et que, de ce fait, elle ne devrait pas être soumise aux mêmes contraintes.
La question demeure : l'échantillonnage d'ADN, avec sa myriade de règles et d'enjeux, peut-il simplement se greffer aux essais classiques sur les médicaments? Une certaine harmonisation des approches à la mise en banque est essentielle, sinon cette forme indirecte de " mise en banque de la population ", soit affectera la participation en créant une méfiance due à la protection inadéquate des sujets, soit verra avec le temps ses buts contrecarrés par l'opportunisme scientifique et éthique de la confidentialité actuelle des échantillons, qui diminue leur durée de vie utile.
Les chercheurs du CRDP s'intéresseront aux enjeux soulevés par ces questions. L'équipe du CRDP a d'ailleurs construit une base de données (HumGen) couvrant des lois, des codes professionnels, des directives éthiques ainsi que des recommandations officielles aux niveaux international, régional et national dans les domaines reliés à la génomique tels que la confidentialité et le consentement des échantillons d'ADN. Forte de cette expertise, l'équipe du CRDP est en mesure de répondre aux besoins des chercheurs et de préparer des instruments d'encadrement éthico-juridiques spécifiques aux questions soulevées par la pharmacogénomique.
2006 - 2009
Organisme subventionnaire: Génome Québec
Aucun médicament ne convient à tous les patients. On croit que les différences génétiques entre les patients expliquent les diverses réactions aux médicaments. La génomique ouvre la voie à une médecine personnalisée, prédictive et préventive, et la pharmacogénomique en particulier utilise les renseignements génétiques d’un patient pour prévoir les réactions individuelles aux médicaments. C’est là un sujet important, car les réactions indésirables aux médicaments sont une cause importante d’hospitalisation et de mortalité au Canada, aux États-Unis et en Europe.
L’équipe du projet examinera la toxicité des médicaments hypolipidémiants, en particulier les statines, qui sont utilisées pour traiter l’athérosclérose, la concentration de lipides ou de graisses qui rétrécissent ou bloquent les artères. L’équipe étudiera également l’efficacité de nouveaux agents anti-athérosclérotiques.
L’équipe prévoit identifier les biomarqueurs pertinents qui pourront ensuite servir à élaborer des tests diagnostiques. Les résultats aideront à déterminer comment les patients réagiront aux traitements de maladies cardiovasculaires, compte tenu de leur profil génétique. L’équipe du projet élaborera également des lignes directrices en éthique qui aideront à planifier la recherche future en pharmacogénomique, ainsi que des modèles et des stratégies d’intégration des connaissances génétiques aux pratiques des soins de santé.
Close2013 - 2017
Organisme subventionnaire:
In Canada, Citizenship and Immigration Canada (CIC) representatives increasingly resort to DNA testing to confirm biological filiations in the realm of immigration sponsorship possibly leading to genetic discrimination as documented in Canadian case law. In collaboration with the Canadian Council for Refugees and Immigration Canada, this project proposes a multidisciplinary analysis (qualitative research, systematic review, and consensus conference) to: 1) determine the social, cultural, and ethical issues associated with the use of DNA testing in the family sponsorship process; and 2) propose a legislative and political reform in response to this emerging problematic.
Close2004 - 2007
Organisme subventionnaire: Fondation canadienne pour l'innovation (FCI)
Ce projet multicentrique vise la création d’un partenariat regroupant 13 centres de recherche de premier plan qui collaboreront à l’évaluation d’une nouvelle technique pour l’identification d’anomalies chromosomiques chez des enfants souffrant d’un handicap mental grave dont la cause est inconnue. À cette fin, les centres participants mettront sur pied une infrastructure de recherche comprenant, entre autres, un système pour la cueillette de spécimens et de données de recherche clinique provenant de plusieurs centres, une banque de données nationale contenant des renseignements cliniques et de recherche au sujet de personnes ayant subi des analyses cytogénétiques, une banque nationale d’ADN et d’échantillons cellulaires, ainsi qu’une infrastructure de gouvernance de l’information.
Le Projet génétique et société, en collaboration avec l’équipe du professeur Pierre Trudel, développe l’infrastructure de gouvernance de l’information. Celle-ci vise à établir les balises qui permettront de veiller à ce que la cueillette des échantillons et des données de recherche clinique se déroule dans un contexte juridique, éthique et social approprié. Le projet génétique et société étudie aussi les questions juridiques, éthiques et sociales que soulève la recherche chez des enfants handicapés mentalement et leur famille.
Close2008 - 2011
Organisme subventionnaire: Génome Québec
L’épisode de SRAS au Canada, l’émergence de plusieurs maladies virales telles que le virus du Nil occidental et la grippe aviaire, ainsi que la menace d’une pandémie à court terme, mettent en évidence la nécessité de développer un système de production de vaccins rapide, sûr et efficace. Les conclusions de ce projet permettront d’améliorer l’expertise canadienne dans ce domaine et d’assurer la diffusion de l’information à travers le monde, particulièrement dans les pays en voie de développement. La plateforme génomique et protéomique sera formée d’un équipe compétente et multidisciplinaire composée de chercheurs du milieu académique provenant du Canada, de l’Afrique, de l’Europe et de l’Amérique du Sud ainsi que de cliniciens et de partenaires du milieu privé.
Close2007 - 2010
Organisme subventionnaire: CRSH - Conseil de Recherches en Sciences Humaines du Canada
Ce projet de recherche explorera la pertinence de la structure actuelle de la réglementation des produits reliés à la nanomédecine, et tombant sous le champ de compétence de la Direction Générale des produits de santé et des aliments de Santé Canada. Les principaux objectifs de ce projet sont de : (1) identifier les enjeux saillants et les lacunes législatives et réglementaires associées au processus actuel d’approbation pour les produits reliés à la nanomédecine (e.g. : drogues, appareils médicaux, produits de santé naturels et cosmétiques); (2) identifier, décrire et analyser les exigences légales et réglementaires envisagées et/ou employées dans d’autres juridictions, afin d’adresser les lacunes évoquées en (1); (3) comparer les exigences légales et réglementaires envisagées et/ou employées dans les différentes juridictions, avec le cadre normatif canadien; (4) identifier et structurer les options en matière de politiques concernant la réglementation de la nanomédecine, pour un examen de celles-ci par les décideurs canadiens; et (5) communiquer les thèmes et buts de cette étude à un public plus étendu.
Close2016 - 2019
Organisme subventionnaire:
Evidence suggests that the majority of breast cancers develop in a small proportion of women with susceptibility to the disease. The identification of these is a determining factor in the effectiveness of prevention. Currently, high-risk women are mainly identified on the basis of a family history of cancer and screening for mutations in BRCA1 and BRCA2 genes. However, recent breakthroughs in genomics have led to the identification of a large number of genetic variations associated with breast cancer. These include variations/rare mutations in new genes or predisposition/rare mutations in novel susceptibility genes, conferring a range of moderate to high risks, as well as common variations (SNPs) associated with the risks of cancer <1.5 times the risk of the general population. Knowing that SNPs act multiplicatively, they can be combined into a polygenic risk profile in order to stratify women, with or without family history, according to their individual risk. A much more accurate risk prediction could be obtained by combining data from all genetic variations (frequent and rare) with other recognized risk factors. It is imperative to conduct studies using large international cohorts in order to obtain reliable estimates of individual risk in order to improve models of prediction of risk of breast cancer/risk prediction models and better adapted therapies, facilitating the identification of women who can benefit the most (substantially) from the approaches of prevention, reduction of risk and of the best adapted therapy/ treatments. This is why two major projects were set up: PERSPECTIVE, led by the Quebec team, and BRIDGES, funded by the European Commission-Horizon 2020 (09/2015-08/2020), of which University Laval is a partner without funding. Professor Simard’s participation was determining/decisive (had been determined) considering that the results of PERSPECTIVE will be very useful for the realization of several BRIDGES objectives. The funding of the MEIE for the project will come at a pivotal time, permitting/providing consolidation or consolidating the leadership of the Quebec team in the BRIDGES project, which will be all the more critical since the financing of PERSPECTIVE will end in March 2017. Our results will improve targeted disease prevention in the context of oncogenetic/oncogenic clinics and the breast cancer screening program in Quebec.
Close2003 - 2008
Organisme subventionnaire: Institut de recherche en santé du Canada (IRSC)
Il s’agit d’un projet visant l’élaboration de politiques en santé en génétique par la création d’un « knowledge network » regroupant les milieux universitaires, conseil et gouvernementaux. L’objectif est de répondre en temps opportun par de la recherche transdisciplinaire à des questions pertinentes à l’élaboration de politiques dans le domaine de la génétique. Trois axes sont retenus : la génétique et les services de santé, la génétique et la santé publique, la génétique et la communication avec le public, chacune sous la responsabilité d’un organisme conseil. Les moyens privilégiés comprennent l’implication des décideurs, la rédaction de « policy briefs », la formation de chercheurs, le renforcement des équipes existantes et la rétention des chercheurs. Les retombés attendues sont la prise en compte des recherches dans l’élaboration des politiques, l’amélioration des services génétiques, l’implication éclairée du public et l’instauration d’un transfert technologique viable.
Close2016 - 2021
Organisme subventionnaire: 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
Organisme subventionnaire: 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
Close2006 - 2009
Organisme subventionnaire: Génome Québec
L’équipe du projet GRID ne cherchera pas à identifier de nouveaux gènes. Elle étudiera plutôt les mécanismes régulateurs dans les maladies humaines courantes, par exemple la production, l’assemblage et le renouvellement de gènes anormaux. Elle caractérisera plus de 250 gènes pathologiques qu’on croit liés au diabète, à l’asthme, aux maladies inflammatoires et à certaines formes du cancer. L’équipe prévoit identifier une cascade d’étapes biologiques amorcées par les mécanismes régulateurs dans 25 gènes qui modifient le risque à la maladie.
En déterminant les étapes biologiques amorcées par les mécanismes régulateurs, l’équipe de recherche espère mieux comprendre comment le risque de maladie est modifié. Ces résultats devraient ouvrir la voie à de nouveaux traitements et produits de santé. En même temps, l’équipe étudiera les répercussions et les aspects éthiques de cette recherche, afin d’élaborer un cadre pertinent pour ce projet et ceux qui suivront.
2014 - 2015
Organisme subventionnaire:
This project comprises three synergistic research objectives: 1) Identifying the existing environment and gaps in the Canadian legal and policy framework applicable to the use of cloud computing for genomic research; 2) Documenting and analyzing the policies currently used by several significant cloud providers to address privacy issues; and 3) Developing tools and strategic recommendations to assist Canadian policymakers fill the policy gaps and guide Canadian privacy professionals and genomics researchers in developing privacy-enabled cloud-based genomics research.
Close2019 - 2020
Organisme subventionnaire: Office of the Privacy Commissioner of Canada
Over the past few years, epigenetic and microbiomic tests have been commercialized by private companies, some of which are currently being advertised and offered to the Canadian public online. The collection and use by private companies of such biological information raises serious legal and ethical privacy concerns. The privacy implications raised specifically by the increase in diversity of these new forms of biological data – and their integration with genomic datasets – have not been seriously addressed yet. This project will investigate the privacy issues emerging from the rapid scientific development and commercialization of what the researchers call “postgenomic biometrics.”
Close2018 - 2022
Organisme subventionnaire: 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 Que?bec, by improving access and availability of resources and integrating knowledge into practice. The Que?bec 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 of ASD family trios (proband participant, and first-degree relatives) in families where a child has been diagnosed with an autism spectrum disorder. The CGP has developed 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 and is providing ongoing support with the management of emerging ethical questions pertaining to the implementation of the Q1K project and the TACC network.
Close2009 - 2015
Organisme subventionnaire: Institut de recherche en santé du Canada (IRSC)
The QTNPR network is creating a multidisciplinary curriculum on the impact of environmental exposures on maternal and child health. The objectives of QTNPR are to 1) provide trainees the knowledge, skills, and values that will allow them to address the complex interdisciplinary challenges of the current reproductive and perinatal health environment; 2) integrate into a single training network several research groups with complementary expertise in reproductive, perinatal, and infant health research; 3) link state-of-the-art, discipline specific teaching to crosscutting core competencies in the form of a transdisciplinary training grid; and 4) establish and maintain national and international partnerships with relevant complementary training programs.
2011 - 2012
Organisme subventionnaire:
One of the biggest current challenges in human genetics is the identification of genes and variants responsible for phenotypic variability and susceptibility to common genetic disorders. We postulate that rare Mendelian disorders should be used as a tool to identify phenotypically important genes. Historically, such disorders have been neglected, both because of their rarity and because of the difficulty in identifying the underlying genes and mutations. Current sequencing technologies have drastically altered the playing field. We can now sequence individual genomes at manageable costs. In this project, we propose to set up a high throughput sequencing platform to detect mutations underlying rare Mendelian disorders. We will also establish a bioinformatics pipeline for annotation, prioritization, and selection of the genetic variants that are most likely to be responsible for the observed phenotype. Our initial approach will rely on isolating and sequencing only the coding portions of the human genome, but we anticipate that within this funding period, the rapidly decreasing cost of sequencing will render our pipeline operational at a whole-genome scale. The goal is to create a seamless technology and informatics platform allowing us to detect disease causing mutations within a week of obtaining DNA samples. We will also create cell and animal models to validate and understand the causative role of selected mutations. We aim to establish a reputation and extend a network of collaborations to position McGill as a centre for mutations detection, screening, and - in the future – genetic testing.
Close2005 - 2006
Organisme subventionnaire: Institut de recherche en santé du Canada (IRSC)
Ce projet est la première étape d’un programme multi phases ayant pour objectif d’examiner les différentes approches dans la prise en compte des enjeux éthiques, sociaux et juridiques dans l'évaluation de technologies de santé. Au cours de cette étape, des méthodes rigoureuses seront utilisées afin d’identifier et d’explorer les enjeux conceptuels et les défis méthodologiques. Une attention particulière sera portée au programme de dépistage génétique à l’aide de deux exemples spécifiques: les programmes de dépistage néonatal pour la fibrose kystique et les programmes de dépistage parental pour les hémoglobinopathies.
Close2004 - 2009
Organisme subventionnaire: Institut de recherche en santé du Canada (IRSC)
L’équipe du Projet Génétique et Société du Centre de recherche en droit public (CRDP) applique et développe des modèles de recherche qui contribuent à la compréhension de l’encadrement de la recherche. Les thèmes étudiés par l’équipe du CRDP sont : 1) le recrutement : le besoin d’inclure des personnes vulnérables telles que les femmes enceintes et les enfants en recherche est généralement reconnu, mais il soulève plusieurs questions éthiques et juridiques ; 2) les biobanques : l’équipe du CRDP se penche sur les questions relatives à la sécurité et à l’accès aux données par les chercheurs ; 3) l’utilisation secondaire des données : de manière à respecter l’autonomie des participants à la recherche et afin d’assurer la transparence du projet, il est important de s’assurer que les utilisations secondaires possibles soient prévues lors du consentement au projet de recherche initial.
Close2011 - 2015
Organisme subventionnaire: Fonds de la recherche en santé du Québec
Do the current ethical and legal policies applicable to research with genomic databases sufficiently account for the new reality of open biotechnology? How could the current policy framework be improved to facilitate the transition to a more transparent, collaborative research context? Our research will investigate the impact of open biotechnology on research ethics and legal policies with a particular focus placed on informed consent (scope of consent, privacy, data ownership) to large open database projects. We will use a combination of quantitative and qualitative research strategies that will offer complementary applied legal and ethical data on the impact of open biotechnology on the governance of genomic research. The use of a common research methodology in all streams of the project will facilitate comparisons and integration of our results. Our methods will include comparative legal and ethical research (policy review, legal research), questionnaire analysis and focus group interviews. To validate our findings, we will engage stakeholders at the annual meetings of two major organizations involved in research with open databases: The Public Population Project in Genomics (P3G) and the International Cancer Genome Consortium (ICGC).
2018 - 2019
Organisme subventionnaire:
Scientific developments and their expanding scope demonstrate the need to continue socio-ethical and policy discussions surrounding the fields of stem cells, and genetic and reproductive technologies. Reform of the Assisted Human Reproduction Act (AHRA) remains uncharted. Yet, there is a critical need for policy guidance adaptive to the complexities of “cellular genomics.” In 2016, the Canadian Government announced its intention to strengthen and clarify the policy frameworks regulating assisted human reproduction. Consequently, from 2016-2017, the CGP, together with the SCN and other collaborators (the “Policy Group”), sponsored four workshops to assess the adequacy of existing regulatory frameworks. The outcome was a series of peer reviewed publications leading to a Consensus Statement to guide reform of the AHRA. Another outcome was future agenda setting highlighting the necessity to move from policy development to consultation and validation.
We proposed a critical series of interactions with Canadian stakeholders with the objective of consulting and validating our recommendations, to propose effective policy translation. This approach was supported by organizations such as the Canadian Medical Association (CMA), the Canadian College of Medical Geneticists (CCMG-CCGM), governmental agencies (e.g. Health Canada), and academic-industry organizations such as the Centre for Commercialization of Regenerative Medicine (CCRM).
Close2014 - 2017
Organisme subventionnaire:
The goal of the Regenerative Cell Therapy Network (RCTN) will be to standardize RCT by sharing the data generated at each participating center, by accelerating the implementation of novel cell therapy applications, and by reducing operational costs, consequently enabling more rapid technological advances. The RCTN will also promote the implementation of innovative cell therapy approaches in patients by disseminating knowledge to: 1) clinical centers with the expertise to identify suitable patients and administer the cells; 2) industrial partners to further develop and commercialize cell therapy strategies; and 3) patients to discuss treatment opportunities and implications. The RCTN will enable Canadian investigators to share information and engage with scientific collaborators, cell therapy organizations, and regulatory bodies from around the globe. Through RCTN’s unique collaborative approach with non-profit organizations, the knowledge capacity and access of patients to cutting-edge care will be enhanced.
Close2021 - 2022
Organisme subventionnaire: Réseau des cellules souches
Advances in regenerative medicine challenge both traditional legal classifications and professional ethics norms. The development of a Regenerative Medicine Charter by the CGP, founded on both international human rights and recent policy guidance, seeks to frame the future conduct of research in regenerative medicine. To do so, we examine the current international ethical and legal landscape concerning cellular genomics, bioengineering, human genome editing, and stem cell research in order to propose key pillars for the Regenerative Medicine Charter. In particular, we posit that the respect of the human right to science, to health, and to non-discrimination as well as the principles of quality/safety, integrity/accessibility, and transparency/accountability could guide the ethical future of regenerative medicine. Hopefully, the Charter will bring together and inspire the diverse communities of policymakers, scientists, clinicians, as well as patients and their families as they face the challenges of regenerative medicine.
Close2001 - 2003
Organisme subventionnaire:
Department of Energy (États-Unis)
The Office of Science of the Department of Energy (DOE) a été désignée pour emmagasiner l'information génétique et les prélèvements de tissus. Des études sont nécessaires sur trois aspects : ( 1) l'évolution rapide des bio-banques, et en particulier, l'émergence des multiples types de bio-banques qui soulèvent des questions éthiques et juridiques ; (2) réflexions sur les relations entre les considérations éthiques et juridiques lors de l'émission d'une réponse sur les bio-banques ; (3) la perspective d'une étude comparée internationale afin de permettre une certaine harmonisation des standards.
TL'objectif de ce projet est de développer et d'appliquer un cadre conceptuel afin de comprendre les implications éthiques, normatives et juridiques de la mise en banque de matériel biologique (ci-après bio-banque). La réalisation de ce premier objectif permettra par la suite de construire un cadre analytique pour la réglementation des bio-banques.
De façon plus spécifique, ce projet de recherche vise à :
- réviser et actualiser la littérature sur les enjeux éthiques, juridiques et normatifs des bio-banques classiques. Cette révision permettra de développer des outils afin d'assister les chercheurs et autres intéressés à adopter des standards uniformes;
- évaluer de façon critique les initiatives de recherche des populations comportant une mise en banque et leurs efforts de réglementation;
- Contribuer au raffinement et à l'harmonisation des standards relatifs à la commercialisation des bio-banques;
- conduire des recherches originales en éthique et en droit sur l'émergence des bio-banques virtuelles afin d'analyser les options pour la réglementation au niveau provincial, national et international.
2018 - 2022
Organisme subventionnaire: National Institutes of Health (NIH)
This study aims to understand and document the regulation of Direct-To-Participant (DTP) genomic research around the world. We developed and distributed a survey to law and policy experts in 31 countries in order to clarify the law, regulation, and policy governing this novel and emerging approach to research recruitment in the genomics context. Our team at the CGP played a central role in research design, participated in expert working groups to identify and prioritize the key issues for the standard questionnaire, identified and recruited potential expert participants, and analysed final research results. We played an active role in the formulation of conclusions and recommendations for the future governance of DTP genomic research. We also coordinated the preparation of a special issue of the Journal of Law, Medicine, and Ethics detailing our findings and presenting the team’s recommendations. The special issue was published in 2020. We have further disseminated our findings in several international conference presentations.
Close2016 - 2021
Organisme subventionnaire: Institut de recherche en santé du Canada (IRSC)
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 the 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 cohort data and biological samples. The CGP’s role is to study 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 will compare the different clauses and processes to identify similarities and divergences and has notably developed a Points-to-Consider document 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.
Close2006 - 2020
Organisme subventionnaire: Fonds de recherche du Québec - Santé (FRQS)
The RMGA is a Québec network of multi- and trans-disciplinary network of researchers seeking to facilitate both applied research in medical genetics in Quebec and the transfer of new knowledge useful to this population. More specifically, its objective is to support and develop basic and applied human genetic research by creating, managing, and promoting scientific infrastructures and knowledge transfer through health services and interventions for the benefit of the Québec population. The Network has 350 members representing the majority of human genetics researchers in Québec. The RMGA included a Legal and Socio-Ethical Issues Infrastructure at the CGP that considered issues arising from the research activities of the RMGA members and provided ELSI guidance on emerging issues. For example, in 2016, the CGP consolidated a decade of RMGA policies into a prospective Statement of Principles addressing ten different issues raised by research involving human: recruitment of research participants, informed consent, secondary use of data and/or biosamples, privacy and confidentiality, professionalism, conflicts of interest, discrimination and stigmatization, governance of biobank and databases, commercialization and return of results. The Québec Network of Applied Genetic Medicine has also been actively involved in the legal and social debate regarding the federal law on genetic discrimination. The RMGA had notably developed a Position Statement on Genetic Discrimination.
Close2008 - 2016
Organisme subventionnaire: Fonds de la recherche en santé du Québec
The RMGA is a network of multi- and trans-disciplinary researchers. Its objective is to support and develop basic and applied human genetic research by creating, managing, and promoting scientific infrastructures and knowledge transfer through health services and interventions, for the benefit of the Quebec population.
The Network has close to 350 members, representing the majority of human genetics researchers in Quebec. The RMGA includes a Legal and Socio-Ethical Issues Infrastructure at the CGP that considers those issues arising from secondary use of biological materials and data in health research.
Close
2014 - 2019
Organisme subventionnaire: Fonds de partenariat pour un Québec innovant et en santé (FPQIS)
This project aims to broaden and deepen the existing Q-CROC Network which has developed internationally recognized expertise in designing and executing biopsy-driven studies to identify biomarkers in metastatic cancers. Moreover, it will use a program in which all new cancer patients are asked to consent to having their primary tumor biobanked and profiled, to having their entire clinical course anonymously recorded, and to being re-contacted for additional studies. Consistent with its prospective population-based approach, the new trans-national global network will help generate the large scale of profiled patient numbers and build an enormous biological and clinically annotated database.
Close2008 - 2013
Organisme subventionnaire: Institut de recherche en santé du Canada (IRSC)
La mission de ce réseau multi-institutionnel et du programme de recherche transdisciplinaire souhaite permettre :
1) D’augmenter la qualité et l’influence de la recherche en périnatalité, au Québec et au Canada
2) De former la prochaine génération de chercheurs dans un environnement qui reflète les quatre mandats du IRSC
3) De créer un modèle de recherche régional et provincial innovateur pour assurer les soins sur la base existante.
Il existe d’importantes lacunes concernant les connaissances de l’impact à long terme de s’exposer à différents éléments (environnementaux ou génétiques) pendant la grossesse pour les générations futures. Cette situation est due à l’incapacité en recherche clinique en obstétrique, pendant les années de suivi en néonatalité et en pédiatrie, de produire des données prospectives transcendant le domaine de l’obstétrique.
2001 - 2005
Organisme subventionnaire: Réseau des cellules souches
Organisme subventionnaire canadien : Networks Centres of Excellence
Le groupe d'application Stem Cell NET NCE regroupe plus de 50 chercheurs à travers le Canada. Les thèmes de recherches principaux comprennent : 1) biologie des cellules souches (identification des gènes définissant la différenciation des cellules souches, leur renouvellement ainsi que leur développement ; 2) génie biologique des cellules souches (modification génétique, génie tissulaire, développement vectoriel) ; 3) applications thérapeutiques (régénération et réparation, essais cliniques) et ; 4) enjeux éthiques, sociaux, juridiques et revue des différentes approches normatives.
C'est en vertu de ce 4e thème que des membres du CRDP, en collaboration avec d'autres chercheurs en bioéthique du Canada, se questionnent sur : les sources des cellules souches (embryons, tissus feotaux, adultes…) ; la commercialisation des recherches ; les précédents sur les animaux ; les différentes réglementations et lignes directrices et, l'éthique de la recherche.
La banque de données HumGen nous permet l'accessibilité aux différentes politiques internationales et de cette façon, facilitera une étude comparative de celles-ci. En ce sens, un module distinct (StemGen) de la banque de données centrale sera créé spécialement pour les cellules souches, le clonage et les thérapies géniques.
Close2011 - 2013
Organisme subventionnaire: National Institutes of Health (NIH)
This project, in partnership with research groups in the United States, aims to determine what criteria should govern return of individual results in paediatric genomic research, using analysis of US law and international guidelines regarding decision making for and by minors as the foundation. This issue, which has received remarkably little attention, must be resolved if this research, which is vital to understanding the contributions of genetic variation to the health of children, is to proceed. In order to develop these criteria, the project will draw upon a host of ethical, legal, and sociocultural sources, as well as empirical data. The Centre of Genomics and Policy is analyzing international (including Canadian) policies and guidelines on the return of pediatric research results, and the US PI’s are analyzing US legislation and case law that may impact on the return of pediatric research results.
2013 - 2017
Organisme subventionnaire:
The goal of this project is to develop an integrated information campaign that aims to sensitize the population to the importance of considering family history to fight effectively against breast cancer. The campaign also aims to better equip health professionals to evaluate the risk of breast cancer on the basis of family history. This campaign will be realized through a rigorous process that will partner diverse professional and community associations. Information and sensitization tools will be developed and compiled into information toolkits. These toolkits will respond to three needs: to effectively collect, use, and share information on family history of breast cancer. The tools will allow users, for example, to answer the following questions: From whom should I obtain information? What kind of medical information do I need? How can I obtain this information from my family? With whom should I share the information I gather on breast cancer risk? The present team is a group of experts in genetics, epidemiology, public health, psychosocial evaluation, ethics, and public law, all of whom possess a specific expertise in breast cancer.
Close2020 - 2022
Organisme subventionnaire: Fondation canadienne pour l'innovation (FCI)
Data has the potential to dramatically transform biomedical research and health care. In particular, we are now in an era where genomes can be systematically sequenced and provide fundamental insights into our predisposition to diseases, our response to therapies and how our health can be affected by our environment. Recognizing this, Canada has been at the forefront of the genomic revolution, making a combined investment of more than $2.4 billion in this field. However, as a global scientific community, our ability to interpret and utilize this type of information is still only at a nascent stage. Specifically, to fully realize the benefits of genomic and health data, we need infrastructure to securely store, analyse and employ this information without compromise. Moreover, when appropriately consented, we need tools to share these data both nationally and internationally, since a critical mass of samples is needed for advanced machine learning approaches and to enable key biomedical discoveries. Our SecureData4Health proposal will create within Canada the computational and software infrastructure needed to safely store, interpret and share the genomic and health information that is rapidly expanding within our centres and hospitals. It will also facilitate access to the wealth of complementary information being made available across the world. The SecureData4Health infrastructure will be deployed within the existing host sites of Compute Canada, allowing our team of scientists and users easy access to the technologies needed to reap the full benefits of their data, without the need to duplicate resources. Finally, our project will provide innovative data sharing modalities where the security and confidentiality of participants’ data will be paramount. It will enable Canada to play a leading role in the challenging but critically important movement towards international health data sharing.
Close2011 - 2012
Organisme subventionnaire: Génome Québec
This project aims to develop and make available real-time PCR technology at point-of-care for rapid detection of infections. Our research concentrates on the legal and ethical issues associated with the use of such a diagnostic tool. More precisely, we undertake two research objectives. The first is to examine whether healthcare institutions in Québec have a duty to integrate effective new technologies - such as real-time PCR - into their services, especially in regard to the growing problem that are nosocomial infections. The second aims to study how the use of real-time PCR technology at point-of-care will affect the legal duties of healthcare professionals.
Close2014 - 2017
Organisme subventionnaire:
The Sino-Québec Perinatal Initiative in Research and Information Technology (SPIRIT) was created to fulfill three main objectives: 1) Promote collaboration in epidemiological and fundamental research concerning the intra-uterine determinants of health and child development as well as research on perinatology health services in Shanghai and in Quebec; 2) Reinforce strategic positioning of our academic and industrial partners in Quebec, China, and internationally by accentuating access to new markets/ expertise and by developing harmonized products adapted to perinatal research; and 3) Consolidate infrastructures allowing transfer and application of knowledge among users and partners, ultimately reinforcing China-Quebec collaborations. By doing so, SPIRIT will set forth updated guidelines, health policies, and transfer activities in the clinical setting.
Close2009 - 2014
Organisme subventionnaire: Institut de recherche en santé du Canada (IRSC)
The objective of the RMGA is to develop the four key goals of its program: training workshops, Genetics Days, training scholarships, and a multi- and transdisciplinary educational program through collaborative supervision. RMGA hopes to widen its scope and access to its training in specific domains that the scientific community and the general population both recognize as essential.
Close2011 - 2013
Organisme subventionnaire: MDEIE - Programme de Soutien à la Recherche - Volet 2
The rules and policies of collaborative oncological gene-environment studies (COGS) as well as the laws and public policies applicable to the international exchange of genetic samples in the United Kingdom, Australia, Canada, Europe (confidentiality), and France (material transfer agreements and broad consent) will be systematically identified and analyzed by this project. Findings will be validated by consultation (teleconference or email) with experts from each of the selected countries or regions. Our analysis, complemented by a critical literature review, will allow us to outline the central similarities and differences between norms and produce recommendations aiming to harmonize the rules of EI-RFCS with those of COGS. Our second objective concerns the communication of information to third parties. We will carry out a review of the relevant law, regulations, and guidelines concerning medical liability and genetic discrimination in Quebec. This review is necessary to identify the actual practices of insurance companies in Quebec and to compare them to legal and ethical norms. We will analyze the forms available on the web-sites of personal insurance companies in Quebec (Desjardins, La Capitale, Groupe Promutuel, etc.). Norms will be organized according to the emergent issues, such as confidentiality, access, and discrimination. The contextual legal analysis of these issues will serve to identify those elements that would benefit from the issuance of recommendations addressing medical liability and genetic discrimination in Quebec.
Close2013 - 2017
Organisme subventionnaire:
The Canadian Alliance for Healthy Hearts and Minds is a project that aims to build on the Canadian Partnership for Tomorrow Project (CPTP), a pan-Canadian research platform, by expanding efforts to identify the early root causes that lead to chronic diseases of the brain, the heart and the cardiovascular system. To do so, the Alliance will gather detailed information from about 10,000 Canadian participants on their environments, lifestyle and behaviors that could affect their cardiovascular health. Participants will also be assessed by magnetic resonance imaging (MRI) of the brain, blood vessels, heart and liver. Adding this to the health and biological information assembled over many years within CPTP will allow researchers to explore how these factors contribute to the development of chronic disease leading to heart failure and dementia. In partnership with the Public Population Project in Genomics and Society (P3 G), the Centre of Genomics and Policy will support the project in its development of consent forms and policies.
Close2011 - 2014
Organisme subventionnaire: Génome Québec
The scientific objectives of this project are to evaluate in a nonhuman primate (NHP; vervet monkey) model differences in the microbiome of the gastro-intestinal tract at different locations, determine whether stool is a relevant material for microbiome studies, and assess how age, sex, genetics and diet influence the diversity of the microbiome at points along the gastrointestinal tract. Microbiome based therapies, namely fecal transplantation (FT) therapeutics, are thought to hold great potential for treatment of a number of disorders. However, potential FT based therapeutics raise GE3LS issues that are unique to microbiome research and implementation. The project aims to investigate the regulatory hurdles of FT based therapies, namely: 1) How would FT based therapeutics, as they are currently prepared and administered, be treated under Canadian and International legislative and regulatory regimes? 2) What are the legislative, regulatory, and/or local administrative hurdles that both current, and anticipated FT based therapeutics face in Canada and Internationally?
2016 - 2022
Organisme subventionnaire: Institut de recherche en santé du Canada (IRSC)
The gender dimorphic effects of prenatal stress are well demonstrated. Girls may be more sus- ceptible to the effects of fetal adversity on fearful temperament, emotional reactivity and inter- nalizing 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 depres- sive 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 gen- der-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 de- pressive 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: 1) the safeguarding of pediatric genomic data; and 2) the consent for data use from children as they become adults.
Close2019 - 2020
Organisme subventionnaire: Réseau de médecine génétique appliquée du Québec (RMGA)
As genomic medicine is increasingly used in the clinic, demand for genetic counselling is growing. Genetic counselling, however, is not regulated in most Canadian provinces, including Quebec. Understanding the potential impacts of this lack of regulation on the provision of health services, on the clinical uptake of genomic research findings, and on the risks incurred by the public is essential. The existence of frameworks regulating the practice of a medical profession is one of the options for safeguarding the protection of the public by reserving the acts and titles of specific health professionals. To determine how the activities of a genetic counsellor could be translated into legal duties, our project aims to categorize the main tasks of genetic counsellors and the risks associated with these tasks in the context of Quebec. To do this, we combine our legal expertise, the expertise of an Expert Advisory Committee composed of RMGA members and a broader stakeholder consultation (e.g., genetic counsellors, medical geneticists, and other medical specialists). Understanding the scope, limits and possible overlap of genetic counselling with acts currently reserved for other health professionals will optimize the integration of genetic medicine applied to the practices and policies of the Quebec health system.
Close2009 - 2019
Organisme subventionnaire: Université de Glasgow
The International Cancer Genome Consortium (ICGC) represents international cancer research projects who share the common aim of elucidating genomic changes in a range of cancers. ICGC has gathered mass volumes of data since its inception culminatory in the PCAWG publication in Nature (February 5, 2020). Data is shared with 1300 researchers from 37 countries. The CGP houses the consortium’s Data Access Compliance Office (DACO). International researchers have obtained access to controlled data for use in genomics, bioinformatics, and related research. The CGP manages the data access process in order to ensure that cutting edge cancer research progresses efficiently and with as broad a reach as possible. To date, DACO has processed over 2000 applications for ICGC Controlled Data Access (including resubmissions and renewals). This project has been realized at the CGP in collaboration with members of the P3G/P3G2 project.
Close2011 - 2014
Organisme subventionnaire: Génome Québec
The project proposes to identify novel prognostic markers and therapeutic targets in acute myeloid leukemia. The ELSI portion of this project, for which the Centre of Genomics and Policy has primary responsibility, analyzes the new Tri-Council Policy Statement requirement that material incidental findings be disclosed to research participants. Of particular interest are how diligent must researchers be in looking for ‘incidental findings’, how should they be disclosed, and how is this obligation funded (or not). We will also be pursuing a qualitative study that will ask researchers about difficulties they have had with this obligation, whether it be know what to disclose, how to disclose it, or how to fund the staff to assist in the disclosure if the researcher is not him- or herself qualified to do so.
2008 - 2012
Organisme subventionnaire: Réseau des cellules souches
Ce projet analyse comment les enjeux éthiques, sociaux et légaux (ELSI) affectent la conduite et direction adoptées dans le domaine de la recherche sur les cellules souches (RCS), ainsi que transfert des connaissances en politiques publiques.
Lors de la présente étape de recherche, nous employons les outils légaux et des sciences sociales déjà existants, afin d’entamer une analyse plus complexe des structures institutionnelles et sociales émergeant autour de la RCS – analyse allant des réseaux de recherche, jusqu’aux mécanismes spéciaux de subvention et de régulation. Le but immédiat de ce travail est de guider la politique de recherche, telle que la future revue de la législation canadienne concernant la recherche sur les embryons soit la Loi sur la procréation assistée. De façon plus vaste, ce travail produira les éléments suivants : des données décrivant la nature et l’impact des environnements de recherche; des recommandations de politiques et des meilleures pratiques; des outils de recherche innovateurs mesurant le retour sur l’investissement en RCS et dans d’autres domaines de la recherche biomédicale; des déclarations de consensus sur les positions de politiques; et des directives concernant les enjeux éthiques, légaux et sociaux appropriés, adressées aux parties prenantes, incluant les membres du Stem Cell network, les membres de comités d’éthique, les comités d’essais cliniques, et le public.
Les objectifs spécifiques comprennent les suivants:
• Fournir une analyse et une description détaillée de l’environnement de la RSC, se faisant, aider à informer le développement et la collaboration internationale, tout en servant comme ressource en matière de recherche;
• Fournir une analyse de l’impact qu’ont différentes variables (e.g., les règles d’éthique de la recherche, la politique en propriété intellectuelle, la disponibilité des subventions) sur la nature et la direction de la RCS, se faisant, informant le développement de meilleures pratiques, des politiques de commercialisation et la mesure du retour sur l’investissement;
• Fournir une analyse et une recommandation concernant la perception publique sur la RCS. Cela aidera à guider le développement des meilleures pratiques pour la communication des développements dans le domaine de la RCS, ainsi que la réception du public des messages des décideurs concernant la recherche
• Guider de manière proactive, les réactions réglementaire découlant des réactions publiques concernant la RCS, en développant des documents de meilleures pratiques pour la communication des découvertes dans le domaine de la recherche et pour la réception par le publique de ces messages communiqués par les décideurs, et
• Guider directement la revue de la Loi sur la Procréation Assistée, en 2009.
2010 - 2013
Organisme subventionnaire: Institut de recherche en santé du Canada (IRSC)
This project aims to examine whole-genome sequence variations from a sample of childhood leukemia (ALL) patients with the following aims: 1) to identify novel sequence and structural variants in childhood ALL genomes; 2) to explore changes in gene expression associated with ALL by examining the transcriptome and allelic expression; 3) to assess the impact of selected genes on disease susceptibility and disease outcomes and investigate the functional significance of these genes in vitro; and 4) to translate the genetic discoveries into appropriate health care policy and services. These findings will ultimately lead to the development of powerful research and clinical tools that could improve detection, diagnosis and treatment of childhood leukemia. The CGP aims to identify ethical, legal and social issues in the return of pediatrics research results. More specifically, our Centre is reviewing the ELSI implications of Genome-wide re-sequencing results on children and parents. This involves an analysis of international and national policy statements, the obligations and needs of researchers and health professionals regarding the return of research results, and the needs of families and their children. This analysis will culminate in the production of a comprehensive discussion document. The development of the discussion document also involves literature and policy review, interviews with healthcare providers and families, and collaboration with various stakeholders.
2010 - 2014
Organisme subventionnaire:
The scientific objectives of this project are to evaluate in a nonhuman primate (NHP; vervet monkey) model differences in the microbiome of the gastro-intestinal tract at different locations, determine whether stool is a relevant material for microbiome studies, and assess how age, sex, genetics and diet influence the diversity of the microbiome at points along the gastrointestinal tract. Microbiome based therapies, namely fecal transplantation (FT) therapeutics, are thought to hold great potential for treatment of a number of disorders. However, potential FT based therapeutics raise GE3LS issues that are unique to microbiome research and implementation. The project aims to investigate the regulatory hurdles of FT based therapies, namely: 1) How would FT based therapeutics, as they are currently prepared and administered, be treated under Canadian and International legislative and regulatory regimes? 2) What are the legislative, regulatory, and/ or local administrative hurdles that both current, and anticipated FT based therapeutics face in Canada and Internationally?
Close2009 - 2020
Organisme subventionnaire: Fonds de recherche du Québec - Santé (FRQS)
Created in 2009, the Québec Cell, Tissue and Gene Therapy Network (ThéCell) focuses on the development of novel cell, tissue and gene therapies to improve patient care in an innovative and sustainable manner. It brings together researchers with diverse expertise in the field of regenerative medicine within Quebec to build a multi-disciplinary team. The Network aims to promote and structure translational research and advance knowledge, technological tools and treatments in regenerative medicine. Prof. Knoppers and CGP members support researchers in their reflection on ethical, legal and social issues (ELSI) raised by the transition from bench to bedside of emerging cell and gene therapies. This comprises two components: 1) Assisting researchers in the development of research protocols (sample governance mechanisms, recruitment and participants’ consent processes); 2) Providing support in the regulatory approval process for these clinical trials. The multidisciplinary aspect of the Network makes it possible to consider and integrate ELSI concerning the scientific reality of clinical trials in regenerative medicine.
Close2013 - 2014
Organisme subventionnaire: Fonds de recherche du Québec - Santé (FRQS)
Research on rare diseases raises special issues regarding the privacy and confidentiality, notably due to the low number of people affected by each of these rare diseases that makes that indirect identification of participants often remains possible despite the usual measures of protection of privacy and confidentiality. Moreover, research on rare diseases requires concerted action and transnational (and even international) data sharing. This fact may exacerbate concerns relating to the protection of privacy and confidentiality. The goal of this pilot-project is to examine whether the legal and ethical rules on protection of privacy and confidentiality can be a barrier to research on rare diseases and to provide, if needed, practical solutions to rectify the situation. This involves an analysis of provincial laws, and national and international policy and guidelines on the protection of privacy and confidentiality of human research participants, as well as a review of the literature. These analyses will culminate in the production of a green paper, i.e. a prospective report containing a set of proposals to be discussed for the development of a policy. This green paper will inform policymakers, researchers and REB on the specific issues of research on rare diseases and outline the strategic measures (legislative, normative or administrative) that could be implemented to not impede research in this area.
Close2009 - 2022
Organisme subventionnaire: Fonds de la recherche en santé du Québec
Created in 2009, the Québec Cell, Tissue and Gene Therapy Network (ThéCell) focuses on the development of novel cell, tissue and gene therapies to improve patient care in an innovative and sustainable manner. It brings together researchers with diverse expertise in the field of regenerative medicine within Québec to build a multi-disciplinary team. The Network aims to promote and structure translational research and advance knowledge, technological tools and treatments in regenerative medicine. Prof. Knoppers and CGP members support researchers in their reflections on ethical, legal and social issues (ELSI) raised by the transition from bench to bedside of emerging cell and gene therapies. This comprises two components: 1) assisting researchers in the development of research protocols (sample governance mechanisms, recruitment and participants’ consent processes) and 2) providing support in the regulatory approval process for these clinical trials. The multidisciplinary aspect of the Network makes it possible to consider and integrate ELSI concerning the scientific reality of clinical trials in regenerative medicine.
Close2005 - 2008
Organisme subventionnaire: Réseau des cellules souches
L’objectif général de ce projet est d’identifier les méthodologies, les réactifs et les lignées cellulaires qui feront une réalité de la thérapie cellulaire dans le traitement des maladies musculaires. La recherche menée chez les enfants soulève de nouveaux questionnements éthiques et juridiques, dont la mise en place de balises ou de procédures dans le meilleur intérêt de l’enfant. À cette fin, nous proposons d’étudier le débat entourant l’inclusion d’enfants en recherche et, en particulier, lors d’essais de thérapies cellulaires.
Au cours de ce projet, l’équipe de chercheur interagira avec des chercheurs spécialisés dans l’étude des enjeux éthiques afin de se pencher sur l’immunosuppression à long terme chez les jeunes bénéficiaires de la thérapie cellulaire.
Close2005 - 2008
Organisme subventionnaire: Réseau des cellules souches
L’objectif de ce projet est de développer une stratégie de traitement basée sur les cellules souches pour l’hémophilie de type A. Ce projet soulève des enjeux éthiques, juridiques et sociaux uniques et demande une réévaluation des enjeux existants. L’analyse des enjeux sociaux, éthiques et juridiques des essais cliniques des thérapies cellulaires dans le traitement de l’hémophilie de type A va au-delà des évaluations concernant le recrutement, la protection des sujets, le consentement, la vie privée et la surveillance. Un des objectifs centraux de ce projet est de développer des lignes directrices pour la mise en place d’un traitement basé sur la thérapie génique cellulaire pour les hémophiles au Canada.
Close2011 - 2014
Organisme subventionnaire: Fonds de la recherche en santé du Québec
This project focuses on three questions relating to a disease-specific biobank: Given its current ethical framework, can the liver biobank e-contact research participants for updates to enrich the quality of the bank? If so, what measures will need to be taken to meet Canadian and international ethical standards? How can a policy to return incidental findings be developed that takes advantage of a double-coding system of privacy protection but is streamlined and efficient? What is the scientific, ethical, legal and policy framework applicable to the return of results in the context of a personalized medicine biobank project?
Close2003 - 2008
Organisme subventionnaire: Institut de recherche en santé du Canada (IRSC)
Plusieurs années seront nécessaires avant que les nouvelles découvertes en génétique permettent d’améliorer la santé et les soins de santé. Toutefois, les personnes en charge de l’élaboration de politiques ont déjà à prendre des décisions à propos des technologies génétiques en émergences et ce, en l’absence de preuves évidentes de leurs bienfaits, de leurs coûts ou autres retombées. Si nous ne pouvons pas évaluer avec exactitude les technologies ou les services, nous ne pourrons déterminer si le projet a atteint ses objectifs ou encore, si une utilisation efficiente des ressources limitées a été faite. La recherche en génétique a besoin de refléter de façon plus large les intérêts de la société concernant le potentiel de nuisance sur l’individu ou un groupe particulier de personnes et la possibilité de minimiser les dommages s’il y a lieu.
Cette nouvelle équipe amène une expertise en recherche et une approche multidisciplinaire variée qui permettront de commencer à regarder ces enjeux. Les membres de l’équipe identifieront les plus importantes questions en recherche et fixeront les priorités en utilisant des méthodes de recherche rigoureuses pour répondre aux questions soulevées. Ils communiqueront leurs résultats par des moyens adéquats auprès du public en général, des professionnels de la santé et des personnes en charge de l’élaboration de politiques. L’équipe aura aussi pour but d’entraîner la nouvelle génération de chercheurs ainsi que d’accroître la compréhension et l’expertise en milieu multidisciplinaire.
2011 - 2015
Organisme subventionnaire: Networks of Centres of Excellence (NCE)
Intellectual property (IP) is perceived as playing an important role in the commercialization process, and the role of patents in particular has received a considerable amount of attention in the literature (Golden 2010). Our focus in this phase will be on the relationship between translation and commercialization pressure (including IP policies), and data access policies. We will investigate current restrictions to access, as reflected in (for example) international stem cell banking policies, including restrictions to future IP claims, and compare them with existing open access policies (e.g., UK Stem Cell Initiative and the CIRM iPS biobank). This work will include an analysis of whether certain commercialization policies, and concomitant IP approaches (such as restrictive patenting practices) do in fact conflict with emerging open access approaches and policies, as reflected, for example, in the UK Stem Cell Bank (Joly 2010; George 2010).
2016 - 2017
Organisme subventionnaire:
This project will complete our clinical trial and allow us to seek Health Canada approval for a new modality of treatment for corneal limbal stem cell deficiency (“LSCD”) using cell therapy. LSCD is a severe disease caused by damage or depletion of the corneal stem cells in the limbal region of the eye following trauma/disease. The epithelial tissue of the cornea can no longer regenerate resulting in chronic inflammation, conjunctivalization, and vision loss. To treat LSCD patients, we developed a tissue engineering technique involving massive expansion of epithelial cells in vitro to produce epithelial sheets for autologous transplantation (cultured epithelial corneal autografts – “CECA”). After twenty-five years of experience with skin substitutes using cultured epithelial autografts (“CEA”) on burn patients, we successfully demonstrated the effectiveness of CECA (pre-clinical studies in animal models), reconstructed human corneas in vitro (CECA), and initiated a clinical trial of a new treatment for which Health Canada approval will be sought with the help of the Centre of Genomics and Policy. Our team of scientific researchers, clinicians, and ethical/legal experts – with extra funding support from CHU de Québec Hospital Foundation, FRQS ThéCell Network – will be the first in Canada to offer CECA treatment for unilaterally blind or vision impaired patients suffering from LSCD.
Close2005 - 2005
Organisme subventionnaire: Alliance canadienne pour la recherche sur le cancer du sein (ACRCS)
L’équipe de recherche propose de développer les bases éthiques et juridiques qui supporteront un protocole visant la compilation rétrospective, l’utilisation et la divulgation des échantillons de tissus cancéreux existants et l’information clinique pertinente provenant de divers centres à travers le Canada. L’équipe suggéra un modèle éthique et juridique qui inclura la gouvernance éthique ainsi que des options de gestion des données pour le CBCRA. L’équipe validera le modèle proposé en le soumettant à des Comités d’éthique de la recherche.
Close2002 - 2004
Organisme subventionnaire: Génome Québec
Bien que la cartographie du génome humain constitue un outil des plus utiles pour la recherche génétique, elle est toujours mal adaptée pour étudier les quelque 10 millions de variations courantes de séquences dans les gènes humains et en particulier pour découvrir leur rôle relativement à la maladie.
Toutefois, des recherches récentes portent à croire que les variations dans les chromosomes humains sont organisées en blocs d'ADN, eux-mêmes organisés en un nombre relativement peu élevé de types (appelés haplotypes), mais de taille relativement importante. La cartographie de cette structure de chromosome et la création de la carte haplotype constitueront ensemble un outil des plus précieux relativement à la découverte de maladies génétiques courantes.
Le Centre de génomique de Montréal, le Wellcome Trust Sanger Institute du Royaume-Uni et le Whitehead Institute/MIT Center for Genome Research des États-Unis collaborent à ce projet.
Les enjeux sociaux, éthiques et juridiques relatifs à la consultation, au consentement et à la communication avec les populations concernées sont hautement pertinents dans le cadre de ce projet. En fait, l'emphase sur des populations définies donne lieu à des préoccupations quant à de possibles stigmatisation et discrimination. Informer le public à propos de la science dans le cadre d'un processus efficace en deux étapes sera abordé.
Close2019 - 2021
Organisme subventionnaire: Agence mondiale antidopage (AMA)
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.
Close2005 - 2009
Organisme subventionnaire: Réseau des cellules souches
Ce projet étudie les enjeux éthiques, juridiques et sociaux en émergence dans l’intégration de la recherche sur les cellules souches en clinique. Ce travail sera effectué via quatre projets:
Projet #1 rassemblera une équipe interdisciplinaire composée d’universitaires, de législateurs, de chercheurs et d’autres groupes d’intérêt afin de se pencher sur les questions d’éthiques soulevées par le passage de la recherche à la clinique. D’une manière plus générale, des considérations d’ordre social quant à la façon dont la recherche peut-être menée dans l’intérêt de tous les Canadiens seront abordées
Projet #2: Étudie les perceptions du public et les représentations populaires de la recherche sur les cellules souches.
Projet #3: étudiera les défis politiques et éthiques posés par la commercialisation (ex:les brevets)
Projet #4: analyse comparative des politiques et lois provenant de divers pays.Cette analyse comparative se penchera sur la recherche sur les cellules souches, la mise en banque et les brevets Plusieurs rencontres internationales se tiendront à l’intérieur de ce projet et permettront à des représentants provenant de 15 pays impliqués dans la recherche sur les cellules souches (Ethics Working Party of the International Stem Cell Forum) de mettre en commun leurs idées.
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