Program
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CADTH WorkshopEconomic Evaluation of Genomic Technologies: Methods and Guidance Presenters
For more information please see "CADTH WORKSHOP" page. 
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Session 1: Research Policy in GenomicsChair Yann Joly McGill University
 Data and bioresource sharing policies: From invisibility to full screenInstitut national de la santé et de la recherche médicale  Academic research in genomics: Facing the translation and commercialization policy pressureProfessor, University of Alberta  Protecting privacy in international genomic researchDirector, Institute for Bioethics, Health Policy and Law, University of Louisville This session will cover topics related to governance and public policy in genomics research. It will address evolving trends in “open science”, including data sharing and privacy challenges. It will also focus on pressures to commercialize research juxtaposed with trends in providing more open access to scientific discoveries. These topics will be discussed in the context of relevant ethical standards, laws, regulations, and governance frameworks. |
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Session 2: GE3LS at the Intersection of Genomics Research and Clinical PracticeChair Vardit Ravitsky University of Montreal
 Patients’ views on incidental findings : To know or not to know and how to decideChair and Executive Director, Regroupement Québécois des Maladies Orphelines, Quebec Coalition of Orphan Diseases  The researcher will see you now?: Genomics, the return of results and the blurring lines between research and careAcademic Coordinator, Centre of Genomics and Policy, McGill University Non-invasive prenatal testing: Clinical, ethical and social issues in implementing an evolving technology into clinical practiceAssociate Professor, Social and Preventive Medicine, University of Montreal  Translating genomic findings into better outcomes for people with psychiatric disorders and their families: Experiences from the world's first specialist psychiatric genetic counselling serviceAssociate Professor, Psychiatry and Medical Genetics, University of British Columbia This session will focus on ethical, social, and economic issues at the evolving interface of research and clinical care in light of new genomics technologies, including implications for policy. It will address areas such as whole genome sequencing, non-invasive prenatal testing, biobanking, and other large-scale genomic data, with a focus on informed consent, communication of results and incidental findings. The session will cover the perspectives of researchers, clinicians, patients, and their families. |
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Ethics in Research: A Science Lifecycle Approach Ethics in Research: A Science Lifecycle ApproachAssociate Director (Interim), Office of Research Ethics, Simon Fraser University Ethics in the health research endeavour is more than a Research Ethics Board review. In fact, focusing on the review can sometimes cloud other important issues where ethics play a major role (from deciding the research agenda, methodology, and partners, up to IP, publication, commercialization, etc). Using of a case study approach, this session will apply an ethics framework analysis tool designed to: |
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Student Presentations ELSI Challenges Associated with Clinical Applications of Exome Sequencing: A Systematic Literature ReviewPhD Candidate, Human Genetics, McGill University Poster: 110  Company Disclosure and Consumer Perception of Privacy Risks of Direct-to-consumer Genetic TestingPostdoctoral Fellow, Psychology, University of Guelph Poster: 111 |
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Keynote From caregiving to advocacy: My family’s not so rare journey in the healthcare and research worldChair, Rare Disease Foundation  The Precision Medicine Initiative: Participants as Partners in ResearchDeputy Director for Science, Outreach, and Policy, Office of the Director, National Institutes of Health |
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Session 3: Psychosocial Impact and Understanding of Genomic Technologies for Patients, Families, and the Public Psychosocial impacts of genetic testing: Were our concerns warranted?Professor, Psychiatry, University of Toronto  Navigating the double helix: Challenges and solutions for integrating genomics into primary careAssociate Professor and Clinician Scientist , Family and Community Medicine, University of Toronto Public deliberation as integration of genomic science into policy and social life Professor and Chair in Biomedical Ethics, Population and Public Health, University of British Columbia The psychosocial impact of genomic technologies spans affective, cognitive and behavioural domains, as genomic-related information can influence how people feel, think, and act. This session will present research that highlights this broad range of psychosocial impact. Examples include public and professional understanding of genomic technologies and personalized medicine, family communication about genetic disorders and new genomic technologies, and the impact of genomic information on health behaviors and public health outcomes. Patient and professional decision-making about genomic information, including testing decisions, as well as coping and living with genomic information in families may also be highlighted. |
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Session 4: Implications of Genomic Technologies for the Organization of Health ServicesChairs Anne-Marie Laberge Centre hospitalier universitaire Sainte-Justine
 Beth Potter University of Ottawa
 Integrating new genomic screening and diagnostic tools into prenatal, newborn, and early childhood systems of careAssistant Professor, Institute of Health Policy, Management and Evaluation, University of Toronto  Personalized care: placing genomics in contextProfessor, Bioethics and Humanities, University of Washington  Multi-disciplinary clinics: A holisitc & collaborative approach to health care delivery for multi-systemic diseasesDirector and Co-founder, Loeys-Dietz Syndrome Foundation in Canada  Challenges to access of genomics technology in care and research: Breaking down barriers with community engagementProfessor, Medical Genetics, University of British Columbia This session will emphasize research and policy responses to the changes in the ways in which genomics is integrated into health care systems. It will focus on the impact of genomic technologies on traditional genetic services for rare diseases as well as on new areas of genetic services, such as personalized medicine and risk prediction. It will explore ways in which genomics affect professionals’ roles and the organization of care. The session will also highlight implications for patient populations, including potential inequities in access to services. |
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Career Development WorkshopPanelistsDeputy Director for Science, Outreach, and Policy, Office of the Director, National Institutes of Health  Associate Professor, Genome Quebec Innovation Centre, Department of Human Genetics, McGill University Chair and Executive Director, Regroupement Québécois des Maladies Orphelines, Quebec Coalition of Orphan Diseases
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Research Funder SessionChair Paul Lasko CIHR
Panelists Chief Scientific Officer and Vice-President Research, Knowledge Translation and Ethics, CIHR The Funders session will include a number of national and provincial health research funders, which will address how their strategic orientation and programmatic initiatives are shaped by various policy considerations and stakeholders, including advances in evaluation sciences and evidence-informed practices, industry partnership, public engagement, government priorities, and international developments. The session will include funders with different yet often overlapping mandates, which often face common challenges and constraints, in the face of an ever more complex health research and innovation ecosystem. It will also help situate the importance of GELS and HSPR research in the larger health research portfolio they manage. In addition, the representatives of these funding organizations will present highlights of, and answering questions related to their programs of interest to the GELS and HSPR research community, including recent reforms or new initiatives. |
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Session 5: Evaluation of the Benefits, Costs and Consequences of New Genomic Technologies: A Societal PerspectiveChair Larry Lynd University of British Columbia
 The challenges of integrating health economics evidence into policy in the area of genomics: A UK perspectiveProfessor of Health Economics, Manchester Centre for Health Economics, The University of Manchester  Preferences of directly affected participants and the general public for genetic testing and screening: Results from choice experimentsDean and Professor, Pharmacy, Memorial University of Newfoundland  Headroom and value in biotherapeutics R&DAssociate Professor and Associate Dean (Research), University of Alberta  Opportunity costs of funding genomic technologiesProfessor, Epidemiology, Public Health and Preventive Medicine, University of Ottawa New developments in genomic technologies result in increased pressures on private and public payers to pay for more treatments and testing within a constrained budget. Evidence of the cost effectiveness of these new technologies is required, including consideration of downstream costs; however, these evaluations raise questions regarding reimbursement of companion tests for pharmaceuticals, the societal value/willingness to pay for new genomic technologies, and the value of population-based screening. Therefore, this session will explore the nuances of health technology assessment and economic evaluation of new genomic technologies and personalized medicine, including the incorporation of societal values into decisions about funding, reimbursement, and priority-setting. |
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Session 6 - Innovating molecular diagnostic technologies for the clinicChairTania Bubela University of Alberta
 Pre-Discussion PresentationDirector of Commercialization Research, Personalized Cellular Immunotherapy Project, Hôpital Maisonneuve Rosemont Panelists Medical Director, Public Health Serology, Provinical Health Services Laboratories, BC Centre for Disease Control This session will explore challenges in late-stage molecular diagnostics development, current best practices and strategies for enabling innovation in molecular diagnostics and personalized medicine. Stakeholder perspectives related to IP protection, technology transfer, investment, commercialization and health care system adoption will be shared and discussed, including both private- and public-sector views. To allow for interactive discussion between the panel members and the audience, the session will be run with minimal time devoted to formal presentations. |
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Concluding Integration PanelChair Karine Morin Alberta Innovates-Health Solutions
Panelists Consultant (Genetic Alliance), Principal Investigator (JS-LIFE: Community Engaged Network for All [CENA] PPRN), Patient Representative and Board member (Joubert Syndrome & Related Disorders Foundation)  Adjunct Professor and Director of Strategy, UBC Centre for Health Care Management, University of British Columbia |
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