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Genomics & Personalized Medicine - Health Policy and Barriers to Adoption

Personalized medicine or precision medicine as it is becoming better known, is the hot topic in health care right now. It is a technology or medical model that incorporates more of an individual's characteristics (mostly genetic) to tailor diagnosis and treatment more precisely. It means that one size does not necessarily fit all when it comes to health and medicine. In the context of health care systems that operate on tight budgets that personal approach is often getting stuck at the policy stage.

On Thursday, June 18th from 1:30 - 4:30 in room ECHA L1 190 (basement) of the Edmonton Clinic Health Academy Building, Genome Alberta, the U of A School of Public Health, the U of A Faculty of Medicine and Dentistry, and Alberta Health Services are holding an afternoon discussion on those sticking points.
You can download the event brochure or read on....

Genomics and Personalized Medicine - Health Policy and Barriers to Adoption will feature several notable speakers who are studying where the promise and the reality of personalized medicine are coming together and where they are drifting apart.

Who should attend? Health and genomics researchers, health economists, policy and decision makers in healthcare, legal scholars.

Why should you attend? While genomics medicine has the potential to revolutionize the way health care is delivered, it also raises economical, legal and societal issues.The speakers in this mini-symposium will be addressing several of these issues and therefore informing your own research/ policy areas of interest.

The event is open to the public but we do ask you to register first. It will also be livestreamed at https://connect.srv.ualberta.ca/r59n7ebwydq/ . Please be sure you are using the latest version of Adobe Flash.


1:30 – 1:45 - Introduction and Welcome. Gijs van Rooijen, PhD, Chief Scientific Officer, Genome Alberta

1:45 – 2:30 - Choosing Personalised Medicine Wisely: realizing value through the ‘genomic’ revolution Chris McCabe PhD, Professor and Capital Health Research Chair in Emergency Medicine Research, University of Alberta

•As the proportion of developed economies that is consumed by health care continues to increase, health systems and their stakeholders are increasingly interested ‘bending the health care cost curve’; driven by a perception that the current cost trajectory is not sustainable in the long run. Recently, the clinical professions have taken a pro active role through initiatives such as Choosing Wisely, Do Less and The Triple Aim. At the forefront of many of these programmes is the push to eliminate ‘low value’ tests from clinical practice. Personalised Medicine almost by definition, requires more testing rather than less, creating a prima facie conflict between two of the most important strategic developments in the delivery of health care. In this presentation we describe a framework for identifying the high value applications of molecular and genetic tests,that can truly personalize an individual’s clinical journey, whilst promoting the optimum use of limited health care budgets.

2:30 – 3:15 - Binning the Genome for Precision Medicine: A Collective Policy Challenge. Wylie Burke MD PhD Professor, Department of Bioethics and Humanities, University of Washington.

•The vision for precision medicine includes increased use of next generation sequencing, a technology that enables sequencing the “whole genome”, comprising a person’s near complete DNA sequence, or “exome”, comprising protein-coding DNA and adjacent noncoding regions, at a cost less than that of many genetic tests currently in use. This testing approach can improve the diagnostic yield of a genetic work-up, increase the efficiency of testing for conditions involving multiple different genes, and offer innovative opportunities for guiding cancer treatment. However, it also generates large volumes of heterogeneous genetic data that are of limited clinical utility or difficult to interpret - a deluge that could overwhelm patients, practitioners and health care systems. The series of steps by which clinically relevant information is derived from DNA sequence offers opportunities for policy development to manage this potential information overload.

A central consideration is the concept of “binning”, to organize genomic information into clinically meaningful subsets that can serve diagnostic and screening purposes. Bins can be designed to achieve specific clinical goals by aggregating information that supports evidence-based practice, while separating out information that is of low clinical utility or inappropriate for health care coverage. To succeed, however, this approach requires empiric data and policy-making that incorporates robust input from all stakeholders, including patients and clinical and public health experts.

3:15 - 3:45 - Coffee/Refreshment Break

3:45 – 4:30 - Changing the landscape of gene patents: social science at work. Richard Gold PhD, James McGill Professor, Faculty of Law, McGill University
•Changing the landscape of gene patents: social science at work. Richard Gold PhD, James McGill Professor, Faculty of Law, McGill University Patents covering human genes have been controversial around the world. While some jurisdictions, such as Latin America and Europe, have dealt these patents through legislation (albeit with different outcomes), common law jurisdictions have addressed gene patents through test cases. As a result, the United States has eliminated patents over genomic DNA while Australia and Canada are currently coming to terms with the issue.
•This presentation will focus on the test cases in the common law world, with emphasis on the United States and Canada, which share similar patent statutes. The presentation will cover the history of the gene patent controversy, the business model adopted by the diagnostics industry, policy concerns and the need to resolve the issue through a test case. It will then summarize the test case in the United States that led to the invalidity of genomic DNA patents and methods of diagnostics before turning to the Canadian test case focusing on LongQT.


Chris McCabe has worked on methodological and applied research for evaluating new technologies to inform health reimbursement decisions for the last 20 years, primarily in the United Kingdom, but also working for governments in Europe, North America and Australasia. He was co-author of the 2004 edition of the UK National Institute for Health and Clinical Excellence (NICE) Guide to the Methods of Health Technology Assessment, and an expert advisor to its update in 2008. With others, he has made key contributions to the application of Decision Analytic Modelling and Value of Information methods to health care resource allocation decisions. He was a founding Director of the NICE Decision Support Unit, an academic collaboration of four Universities providing methodological support and expert peer review to the NICE Technology Appraisal programme. He was first author on one of the first papers to argue that regulatory authorities needed to consider cost effectiveness that would encourage manufacturers to design R&D processes to develop cost effective new technologies. Prior to moving to the University of Alberta Chris was the EPSRC Translational Research Professor in Health Economics at the University of Leeds, in the UK. He is currently senior health economist and Co-Investigator on two UK NIHR funded biomarkers trials.

Wylie BurkeWylie Burke MD PhD is Professor and former Chair of the Department of Bioethics and Humanities at the University of Washington, Adjunct Professor of Medicine, and Member of the Fred Hutchinson Cancer Research Center. Her work focuses on the ethical and policy implications of genetic information in research and health care. She founded the University of Washington Center for Genomics and Healthcare Equality, an NHGRI Center of Excellence in Ethical, Legal, and Social Implications (ELSI) Research; and co-directs the Northwest-Alaska Pharmacogenomics Research Network, a research partnership involving universities and tribal communities in Alaska, Montana and Washington. Dr. Burke received a PhD in Genetics and an MD from the University of Washington. She trained in Internal Medicine at the University of Washington, where she was also a Medical Genetics Fellow. Dr. Burke is a member of the Institute of Medicine and the Association of American Physicians. She is a past President of the American Society of Human Genetics and was the 2013-2014 Presidential Chair at the University of California San Francisco.

Richard GoldDr. Richard Gold is a James McGill Professor at McGill University’s Faculty of Law and Department of Human Genetics in the Faculty of Medicine. He was the founding Director of the Centre for Intellectual Property Policy and teaches in the area of comparative intellectual property and innovation. His research centers on the nexus between innovation, development and commerce, with an emphasis on the life sciences. Professor Gold has provided advice to Health Canada, Industry Canada, the Canadian Biotechnology Advisory Committee, the Ontario Ministry of Health and Long-Term Care, the Organisation for Economic Cooperation and Development (where he was the lead author of the OECD Guidelines on the Licensing of Genetic Inventions and a report on Collaborative Mechanisms in Life Science Intellectual Property), the World Health Organization, the World Intellectual Property Organization and UNITAID. His research has been published in high-impact journals in science, law, philosophy and international relations including Nature Biotechnology, The Lancet, PLoS Medicine, the McGill Law Journal, Public Affairs Quarterly, International Studies Quarterly, and the European Journal for International Relations.

Genomics & Personalized Medicine - Health Policy and Barriers to Adoption

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