Institut national de la santé et de la recherche médicale
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.
Chair and Executive Director, Regroupement Québécois des Maladies Orphelines, Quebec Coalition of Orphan Diseases
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.
Associate 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:
• Help develop skills and knowledge to identify and address the ethical issues inherent in research; and
• Understand the importance of ethics in ensuring not only the safety and well-being of participants involved in health research but also in the research endeavor as a whole.
Associate Professor, Psychology, University of Guelph
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.
Director and Co-founder, Loeys-Dietz Syndrome Foundation in Canada
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.
Director, Programs , Alberta Innovates – Health Solutions
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.
Professor of Health Economics, Manchester Centre for Health Economics, The University of Manchester
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.
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.
Consultant (Genetic Alliance), Principal Investigator (JS-LIFE: Community Engaged Network for All [CENA] PPRN), Patient Representative and Board member (Joubert Syndrome & Related Disorders Foundation)