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Friday, 8 April, 2016 II. CHALLENGES IN THE DEVELO<strong>PM</strong>ENT OF PRECISION MEDICINE ►► PART 1: FOUNDATIONAL RESEARCH Professor Bartha Maria Knoppers, Director, Centre of Genomics and Policy, Faculty of Medicine, Department of Human Genetics, McGill University Activating the Right of Citizens to Benefit from Scientific Advances The Framework for Responsible Sharing of Genomic and Health Related Data of the GA4GH is founded on article 27 of the Universal Declaration of Human Rights. Article 27 maintains the right of citizens to benefit from scientific progress and was enshrined in later binding international legal instruments. How has this right been interpreted? What does it (or could it) mean? The position that we need to "activate " this right will create obligations on governments to facilitate and promote data sharing. Supporting this positive obligation may serve to change the imbalance of power between citizens and health researchers, data stewards and physicians as we move more towards translational medicine. Professor Kazuto Kato, Professor of Biomedical Ethics and Public Policy, Graduate School of Medicine, Osaka University, Japan Genomic Medicine in Japan: Recent Changes in the Government Policy, and New Ethical and Legal Challenge Dr Yann Joly, Associate Professor, Faculty of Medicine, Department of Human Genetics, McGill University; Research Director, Centre of Genomics and Policy Controlled Data Access for Precision Medicine: An Acceptable Trade-Off? The major goal of translational research in precision medicine will be to link genomic information to personal information collected periodically, including the patient’s lifestyle, clinical history, and response to treatment. These rich datasets will need to be securely shared between researchers from both the private and public sectors to promote rapid scientific advancement and the development of new diagnostics and treatments. ‘’Controlled access’’, a process where researchers requesting access to the data must complete an access agreement for personal and institutional identification, can substantially improve the security of such data sharing initiatives. This presentation will highlight the main component of the controlled access approach to data sharing focussing on its potential for research in personalized medicine. The legal, ethical and social challenges and opportunities of using such an approach will be critically assessed. PRECISION MEDICINE: LEGAL AND ETHICAL CHALLENGES 7
Ms Alison Hall, Head of Humanities, PHG Foundation Harm, Discretion or Duty: The Changing Nature of the Return of Individualized Results in Genomics Research The advent of genomic sequencing has generated a rich debate about the potential for generating, interpreting, validating and reporting incidental and secondary findings. The view that it is desirable to ‘actively look’ for well characterised clinically actionable secondary findings is gaining traction, provided that this can be justified in the participant’s or patient’s best interests. There is less clarity about how these developments might impact on researchers undertaking genetics and genomics research and how these might change the nature of the duties and responsibilities that researchers owe to research participants and the liabilities that might result. This presentation assesses these developments and the extent to which adopting personalised approaches within genomic research might change the nature of the relationship between the researcher and research participant. It also explores some wider consequences for research design, management and funding. Dr Janice Tsang, Specialist in Medical Oncology, Clinical Assistant Professor Department of Medicine, The University of Hong KongFounding Convenor, Hong Kong Breast Oncology Group Precision Medicine for Cancer Care - Prime Time versus Provocation Threat"? Cancer is an aging disease and a public health issue. With the emerging aging population, cancer has become an complex health threat with various unmet needs of patients living with the disease. Over the past 2 decades, there have been great breakthroughs in the changing landscape of the management of cancer - from the advent of targeted therapy to personalized treatment to the current second wave of personalized medicine with “Precision Medicine” which involves the increasing visibility of molecular genomic profiling and the potential added value of next generation sequencing which is now moving towards to the clinic at a fast tempo. While cancer patients and family members are having high expectation on the holistic cancer care and their mindfulness with “Precision Medicine” and the easy access to new information of research and development, this presentation is going to give a bird’s eye view of the current status of Precision Medicine in oncology with updates of the potential clinical application, yet the attempt to comment whether this is the prime time for all cancer patients, or this is just the end of another beginning and the emerging potential ethical challenge with some of the controversies coming from the harvest of translational research. PRECISION MEDICINE: LEGAL AND ETHICAL CHALLENGES 8
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Page 5 and 6: Dr Jeffrey M. Skopek, Lecturer in M
Page 7: Mr Tracey Evans Chan, Associate Pro
Page 11 and 12: Dr Chih-Hsing Ho, Assistant Profess
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Page 15 and 16: Ms Alison Hall, Head of Humanities,
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Page 19 and 20: Dr John Liddicoat, Philomathia Post
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