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Law, Ethics and Public Policy: Some Lessons from Genomic Medicine Dr Ron Zimmern MA, FRCP, FFPHM Chairman, PHG Foundatio

Law, Ethics and Public Policy: Some Lessons from Genomic Medicine Dr Ron Zimmern MA, FRCP, FFPHM Chairman, PHG Foundation. Centre for Medical Ethics and Law University of Hong Kong 11 Apr 2013. Introductory Remarks. University of Hong Kong . University of Hong Kong

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Law, Ethics and Public Policy: Some Lessons from Genomic Medicine Dr Ron Zimmern MA, FRCP, FFPHM Chairman, PHG Foundatio

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  1. Law, Ethics and Public Policy:Some Lessons from Genomic MedicineDr Ron Zimmern MA, FRCP, FFPHMChairman, PHG Foundation Centre for Medical Ethics and Law University of Hong Kong 11 Apr 2013

  2. Introductory Remarks

  3. University of Hong Kong University of Hong Kong to produce graduates of distinction committed to lifelong learning, integrity and professionalism, capable of being responsive leaders and communicators in their fields Faculty of Clinical Medicine ..to the development of leadership, to the promotion of humanity..

  4. Centre for the Humanities and Medicine to the conduct of interdisciplinary research and teaching in relation to three broad interconnected themes: the challenges posed by the translation of biomedical technologies into society; the relationship between disease, health, culture and society; and the humanisation of our understanding and practice of medicine

  5. Structure of Talk 1. to say something about my organisation in the UK, the PHG Foundation, and to suggest how our approach and work might have some relevance to the Centre here in Hong Kong • to give a brief account of the conventional approach to medical ethics and law and to suggest that this is neither adequate nor sufficient to meet the needs of health care or health • to use some examples from philosophy and law as applied to the practice of clinical genetics and genomic medicine to illustrate a few philosophical and legal dilemmas 4. to give a brief personal account as to what some of these issues might be in the context of health and social care in Hong Kong

  6. The Work of the PHG Foundation

  7. Public Health Genomics The responsible and effective translation of genome-based knowledge and technologies for the benefit of population health

  8. Connectivity of Health Determinants Determinants of Health Genetic Endowment Genetic Natural Environment Biological Physical INDIVIDUALS POPULATIONS Structural Environment Political Social Individual Behaviour Behavioural

  9. Society Knowledge Generation Communication and Stakeholder Engagement Population Sciences Informing Public Policy Knowledge Integration Within And Across Disciplines Strategy Improvement in Population Health Genome-based Science and Technology Analysis Action Evaluation Developing and Evaluating Health Services Humanities and Social Sciences Education and Training Research The Enterprise

  10. Genetic and Population Sciences and the Humanities GENETIC SCIENCE • Basic concepts of mendelian genetics • Family histories and pedigrees • Risk assessment and communication • Principles of genetic epidemiology • Principles of molecular genetics • Genetic testing and screening • Genetics of common disorders • Gene-environment interaction • HUMANITIES • Sociology • Anthropology • Law • Economics • Ethics • Metaphysics and epistemology • Theology • Political philosophy • POPULATION SCIENCES • Epidemiology • Biostatistics • Environmental health sciences • Infectious diseases • Social and behavioural sciences • Health economics • Health services research • Management science • Information science

  11. Disciplines within the PHGF • Geneticists and molecular biologists • Public health physicians • Epidemiologists • Biostatisticians • Lawyers • Philosophers • Social scientists and social anthropologists • Information and IT specialists • Educationalists • Public involvement specialists • Industrial liaison Strangeways Research Laboratory “Working under one roof”

  12. Acheson Definition of Public Health The art and science of promoting health and preventing disease through the organised efforts of society

  13. The Conventional ApproachWhat Needs to Change?

  14. The Role of the State “the central issue in public health is the extent to which it is acceptable for the state to establish policies that will influence population health” Public Health: Ethical Issues . Nuffield Council for Bioethics (2007)

  15. Thaler and Sunstein’s “Nudge” Every day we make decisions: about the things that we buy or the meals we eat….. Unfortunately, we often choose poorly. We are all susceptible to biases that can lead us to make bad decisions that make us poorer, less healthy and less happy. ….No choice is ever presented to us in a neutral way. By knowing how people think, we can make it easier for them to choose what is best for them, their families and society.

  16. ‘Nudging’ and ‘Shoving’ Nudging “the chances that people act in ways that, on reflection, they would have chosen themselves” Shoving “increasing the chances that people behave in ways preferred by the shover but not the shoved”

  17. The Wolfenden Report (1957) • to preserve public order and decency • to protect the citizen from what is offensive and injurious • there must remain a realm of private morality and immorality which is, in brief and crude terms, not the law’s business

  18. Standard Medical Law Topics • Consent • Confidentiality • Reproduction and abortion • Negligence and medical liability • Resource allocation • Human tissue • Mental illness • Transplantation • Beginning of life decisions • End of life decisions and euthanasia

  19. Beauchamp & Childress Beneficence Non-maleficence Autonomy Justice

  20. Need for Change • Third party payers • Research • Intellectual property • Biomedical innovation and technology • Information systems and technology • Epidemiological trends • Social trends and the rise in consumerism

  21. Nuffield Council for Bioethics (Publications) Genetic screening: ethical issues 1994 Human tissue: ethical and legal issues 1995 Animal-to-human transplants: the ethics of xenotransplantation 1996 Mental disorders and genetics: the ethical context 1998 The ethics of clinical research in developing countries: a discussion paper 1999 Stem cell therapy: ethical issues 2000 The ethics of research related to healthcare in developing countries 2002 The ethics of patenting DNA 2002 Genetics and human behaviour: the ethical context 2002 Pharmacogenetics: ethical issues 2003 Genetic screening: a supplement to the 1993 report 2006 Critical care decisions in foetal and neonatal medicine: ethical issues 2006 The forensic use of bio-information: ethical issues 2007 Public health: ethical issues 2007 Dementia: ethical issues 2009 Medical profiling and online medicine: the ethics of 'personalised healthcare' in a consumer age 2010 Human bodies: donation for medicine and research 2011 Novel techniques for the prevention of mitochondrial DNA disorders: an ethical review 2012 Emerging biotechnologies: technology, choice and the public good 2012

  22. Need for Change • Third party payers • Research • Intellectual property • Biomedical innovation and technology • Information systems and technology • Epidemiological trends • Social trends and the rise in consumerism

  23. The Creative Destruction of Medicine New Medicine Mobile Connectivity & Bandwidth Wireless Sensors Internet Genomics Super Convergence Social Networking Imaging Increased Computing Power & Data Universe Information Systems Old Medicine Adapted from Fig 1: The transformation of medicine today to new individualised medicine enabled by digitisinghumans. Eric Topol (2012)

  24. Change, Scenarios and the Trumpet of Uncertainty Planning and Policy Topol Conventional Social Consumer driven Technology driven Subjective values predominate Decline of trusted intermediaries Patient as partner Individualism reigns Physician driven Technology as aid Objective values assessed professionally Medical profession as trusted intermediaries Patient defers to physician Community values predominate CHANGE Other Technologies Genomics Epidemiology of Disease

  25. Need for Change • Third party payers • Research • Intellectual property • Biomedical innovation and technology • Information systems and technology • Epidemiological trends • Social trends and the rise in consumerism

  26. Examples of Legal and Ethical Issues

  27. NIPD: Ethical and Legal Issues • The abortion debate • Scope of consent • Disability concerns • Sex selection and global implications • Intellectual property • Incidental findings • Equity • Criteria for use

  28. Medical Ethics and Medical law in Hong Kong

  29. Examples from SCMP • HK Privacy Ordinance • Disciplinary Hearings at HK Medical Council • HA reporting code for serious incidents and private hospitals • Corruption in Guangdong hospitals • Regulation of beauty parlors and cosmetic treatments • Risky treatments by private practitioners (septicaemia) • Sharing of e-records between public and private sectors • Euthanasia debate (Quadriplegic Tang Siu-pun) • Balance of responsibility between individual clinicians and systems of care (Tuen Mun Hospital) • Resource allocation for rare diseases

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