The SAGE Handbook of Health Care Ethics: Core and Emerging Issues
Publication Year: 2011
Subject: Ethics in Health Care (general)
The SAGE Handbook of Healthcare Ethics is an influential collection of work by leading scholars on the fundamental and emerging themes which define healthcare ethics. This authoritative Handbook brings together experts with backgrounds in philosophy, sociology, law, public policy and the health professions and reflects the increasing impact of globalization and the dynamic advances in the fields of bioscience and genetics, which keep ethics at the centre of debates about the future direction of healthcare. Combining international and interdisciplinary perspectives, the Handbook provides a cutting-edge account of debates in five key areas: Health Care Ethics in an Era of Globalization; Beginning and End of Life; Vulnerable Populations; Research Ethics and Technologies; Public Health and Human Rights
- Front Matter
- Subject Index
- Introduction—Health Care Ethics in an Era of Globalisation
- Chapter 1: Methodology
- Chapter 2: Foundationalism and Principles
- Chapter 3: Anti-Theory
- Chapter 4: Ethics of Care
- Chapter 5: Emerging Technologies: Challenges for Health Care and Environmental Ethics and Rights in an Era of Globalisation
- Chapter 6: Professional Codes
- Chapter 7: Organizational Ethics
- Chapter 8: Deliberation and Consensus
- Chapter 9: Privacy, Confidentiality and Data Protection
- Chapter 10: Informed Consent
- Chapter 11: Health Information Technology and Globalization
- Chapter 12: Abortion
- Chapter 13: Ethics of Genetic Counseling
- Chapter 14: Regulating Reproductive Technologies
- Chapter 15: Reprogenetics
- Chapter 16: Palliative Care Ethics
- Chapter 17: Medical and Societal Issues in Euthanasia and Assisted Suicide
- Chapter 18: Advance Directives
- Chapter 19: Vulnerability: A Futile or Useful Principle in Healthcare Ethics?
- Chapter 20: Vulnerability in Healthcare and Research Ethics
- Chapter 21: Mental Health and Disorder
- Chapter 22: Medical Research Involving Children: A Review of International Policy Statements
- Chapter 23: Orphan Diseases
- Chapter 24: Poverty and Indigenous Peoples
- Chapter 25: Research Ethics
- Chapter 26: Health Research in the Global Context
- Chapter 27: International Research
- Chapter 28: Ethical and Scientific Issues in Gene Therapy and Stem Cell Research
- Chapter 29: Ethics of Screening
- Chapter 30: Ethics of Clinical Telemedicine
- Chapter 31: Ethical, Legal and Social Issues in Brain Death and Organ Transplantation: A Japanese Perspective
- Chapter 32: Ethical Issues in Nanotechnology
- Chapter 33: Ethics of Environmental Health
- Chapter 34: Pharmaceuticals
Introduction © Ruth Chadwick, Henk ten Have and Eric M. Meslin 2011
Chapter 1 © Vittorio Hösle 2011
Chapter 2 © Henk ten Have 2011
Chapter 3 © Roberto Andorno 2011
Chapter 4 © Rudd ter Meulen 2011
Chapter 5 © Thomas Alured Faunce 2011
Chapter 6 © Michael Davis 2011
Chapter 7 © Eva C. Winkler and Russell L. Gruen 2011
Chapter 8 © Diego Gracia 2011
Chapter 9 © Deryck Beyleveld 2011
Chapter 10 © Vilhjálmur Árnason, Hongwen Li and Yali Cong 2011
Chapter 11 © Kenneth Goodman 2011
Chapter 12 © Y. Michael Barilan 2011
Chapter 13 © Gamal I. Serour and Ahmed R. A. Ragab 2011
Chapter 14 © Don Chalmers 2011
Chapter 15 © Andrea Kalfl agou 2011
Chapter 16 © Pierre Boitte and Jean-Philippe Cobbaut 2011
Chapter 17 © Georg Bosshard and Lars Johan Materstvedt 2011
Chapter 18 © Paul Schotsmans 2011
Chapter 19 © Jan Helge Solbakk 2011
Chapter 20 © Agomoni Ganguli-Mitra and Nikola Biller-Andorno 2011
Chapter 21 © Rachel Cooper 2011
Chapter 22 © Julie Samuël, Bartha Maria Knoppers and Denise Avard 2011
Chapter 23 © Ruth Chadwick and Paul McCarthy 2011
Chapter 24 © Leo de Castro 2011
Chapter 25 © Paul Ndebele 2011
Chapter 26 © Michael McDonald and Nina Preto 2011
Chapter 27 © Volnei Garrafa 2011
Chapter 28 © Kenneth Cornetta and Eric M. Meslin 2011
Chapter 29 © Kris Dierickx 2011
Chapter 30 © Kenneth V. Iserson 2011
Chapter 31 © Tsuyoshi Awaya 2011
Chapter 32 © Bert Gordijn, Rob de Vries and Dónal P. O'Mathúna 2011
Chapter 33 © Michiel Korthals 2011
Chapter 34 © Margit Sutrop and Kadri Simm 2011
First published 2011
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Agomoni Ganguli-Mitra is a research fellow at the Institute of Biomedical Ethics, University of Zurich since 2005. She has worked on the ethics of biobanks, as a member of international project in collaboration with the WHO and the University of Geneva. She has also conducted research on the ethics of synthetic biology, as a member of SYNBIOSAFE, one of the earliest EU projects looking into the safety, security and ethical aspects of synthetic biology. She is currently pursuing a PhD in Bioethics at the University of Basel on the Ethics of International Research.
Ahmed Ragab, is a professor of reproductive health at the International Islamic Center for Population Studies and Research, Al-Azhar University. He teaches also at Cairo Demographic Center. He worked as a Professor of Reproductive and Sexual Health at the African Regional Sexuality Resource Center, Lagos, Nigeria. He helped in developing strategies and programmes that aim at reduction of maternal mortality, tackling gender based violence and improving reproductive health in many of the developing countries, mainly in Africa. He is a member of Ethical Committee of the International Islamic Center for Population Studies and Research, Al-Azhar University, a member of the Advisory Committee for African Network for Social Accountability (ANSA) 2006–10 for North Africa, a member of Africa Faith Based Organization, Durban, South Africa and a member of the founding group of the Ethics Society in the Middle East (under construction).
Andrea L. Kalfoglou, PhD, is an Assistant Professor in the Department of Sociology, Anthropology, and Health Administration and Policy at the University of Maryland, Baltimore County (UMBC). She held research positions at the National Human Genome Research Institute, NIH, Johns Hopkins University, and Institute of Medicine prior to joining the faculty at UMBC. She is on the advisory board of the American Journal of Bioethics, is the immediate past Chair of the Ethics Special Interest Group of the American Public Health Association, and has served on a number of committees with the American Society for Bioethics and Humanities. She has published many peer-reviewed articles in bioethics, public health, medical and genetics journals exploring the use of medical and genetic technology on human reproduction. These articles cover topics such as surrogate motherhood, the experiences of oocyte donors, the use of sperm sorting for sex selection and attitudes about the use of genetic carrier testing to make reproductive decisions. She is currently studying women's attitudes about the use of antidepressant medications during pregnancy.
[Page x]Bartha Maria Knoppers, PhD, O, holds the Canada Research Chair in Law and Medicine (Tier 1: 2001-). Officer of the Order of Canada, she is Director of the Centre of Genomics and Policy at the Department of Human Genetics, Faculty of Medicine, McGill University. Former Chair of the International Ethics Committee of the Human Genome Organization (1996–2004), she is currently Chair of the Ethics Working Party of the International Stem Cell Forum (UK). In 2003, she founded the international Public Population Project in Genomics (P3G) and Quebec's CARTaGENE project. CARTaGENE is a resource of samples and data on the genetic diversity of the population of Quebec.
Bert Gordijn is Chair of Ethics and Director of the Institute of Ethics at Dublin City University. Bert is Editor-in-Chief of a book series, The International Library of Ethics, Law and Technology (Springer), as well as two peer reviewed journals, Medicine, Health Care and Philosophy (Springer) and Studies in Ethics, Law and Technology (Berkeley Electronic Press). He is also Secretary of the European Society for Philosophy of Medicine and Healthcare and founding Secretary of the Irish Chapter of the European Business Ethics Network. He has been appointed to the External Science Advisory Panel of the European Chemical Industry Council and has served on the Scientific Advisory Board of the European Patent Organisation as well as the UNESCO Expert Committee on Ethics and Nanotechnology.
Denise Avard is the Research Director for the Centre of Genomics and Policy and associate professor at the Faculty of Medicine, Department of Human Genetics at McGill University. Her research interests are in the areas of genetic testing and screening relevant to newborn, children, adolescents and persons with disabilities. She has an added interest in knowledge transfer and genetic epidemiology. She obtained her doctorate in social epidemiology from the University of Cambridge, England, and a Master's degree in sociology and a Bachelor's degree in Nursing from the University of Ottawa. Prior to joining the Centre of Genomics and Policy she was researcher in the Centre de la recherche en droit public at the Université de Montreal, Executive Director of the Canadian Institute of Child Health and Assistant Professor in the Faculty of Medicine at the University of Calgary.
Deryck Beyleveld is Professor of Law and Bioethics and currently Head of Durham Law School. He is also Visiting Professor of Moral Philosophy and Applied Ethics at the University of Utrecht. Before joining Durham University in 2006, he was Professor of Jurisprudence at Sheffield University and Director of the Sheffield Institute of Biotechnology Law and Ethics (SIBLE), which he founded in 1993. He co-ordinated the PRIVIREAL project on Privacy in Research Ethics and Law, funded by the European Commission. He has authored or co-authored seven books (including Human Dignity in Bioethics and Biolaw, OUP 2001, and Consent in the Law, Hart 2007) and co-edited four others, including three volumes on data protection law which were produced in the PRIVIREAL project). His numerous publications cover criminology, multiple areas of law, legal and moral philosophy as well as bioethics. He was Vice-Chair of Trent Research Ethics Committee form 1997–2006. He is a Fellow of the Society of Biology.
[Page xi]Diego Gracia, MD, PhD, is a psychiatrist and Professor of History of Medicine and Bioethics at the School of Medicine, Complutense University of Madrid, Spain. He is honorary professor of the Schools of Medicine of the Universities of Chile, Lima, and Cordoba (Argentina). He is Director of the Master's Degree in Bioethics and an Appointed Member of the Royal National Academy of Medicine, and of the Royal National Academy of Moral and Political Sciences of Spain. He is Fellow of the Hastings Center (New York), Fellow of the National Academy of Medicine of Chile, President of the Board of Trustees of the Foundation for Health Sciences (Madrid), and Director of the Zubiri Foundation (Madrid). His main books are Voluntad de verdad (Barcelona, 1986; 2nd edn., Madrid, 2007); Fundamentos de bioética (Madrid, 1989; 2nd edn., 2007, Italian translation, 1992; Portuguese translation 2008); Primum non nocere (Madrid, 1990); Introducción a la bioética (Santafé de Bogotá, 1991; 2nd edn., 2007); Procedimientos de decisión en ética clínica (Madrid, 1991; 2nd edn., 2007); Ética y vida: Estudios de bioética (4 vols., Santafé de Bogotá, 1998); Medice cura te ipsum (Madrid, 2004; Portuguese translation 2010); Como arqueros al blanco (Madrid, 2004; Portuguese translation, 2010); Voluntad de comprensión (Madrid, 2010); and La cuestión del valor (Madrid, 2011).
Dónal P. O'Mathúna, PhD, is Senior Lecturer in Ethics, Decision-Making and Evidence in the School of Nursing at Dublin City University, Ireland. He is an academic member of the Biomedical Diagnostics Institute and the Institute of Ethics at Dublin City University. He is Chair of the Academy of Fellows of the Center for Bioethics & Human Dignity, Illinois and a Visiting Fellow of the UK Cochrane Centre, Oxford. He is the author of Nanoethics: Big Ethical Issues with Small Technology (Continuum, 2009) and co-author of Alternative Medicine (Zondervan, 2007). He has published several peer-reviewed articles and led funded research projects. He is a member of the herbal sub-committee of the Irish Medicines Board and sits on a number of research and hospital ethics committees.
Donald Chalmers is Distinguished Professor of Law and Director of the Centre for Law and Genetics at the University of Tasmania. He is a Foundation Fellow of the Australian Academy of Law. He is Chair of the Gene Technology Ethics and Community Consultative Committee, Deputy Chair of the National Health and Medical Research Council (NHMRC) Embryo Research Licensing Committee and member of the National Breast and Ovarian Cancer Centre Board of Directors. He was Chair of the NHMRC Australian Health Ethics Committee (AHEC) from 1994 to 2000, member of the NHMRC Human Genetics Advisory Committee from 2005 to 2008 and Law Reform Commissioner for Tasmania from 1991 to 1997. Internationally, he is a member of the Human Genome Organisation Ethics Committee and of the International Cancer Genome Consortium Ethics Committee. His current major research interests are in health law and genetics, research ethics and law reform. His research work involves an examination of the legal and governance arrangements for human tissue biobanks. He has been Chief Investigator on several ARC research grants and an NHMRC program grant.
[Page xii]Eric M. Meslin is Director of the Indiana University Center for Bioethics, Associate Dean for Bioethics and Professor of Medicine, Medical and Molecular Genetics, Public Health and Philosophy. He was previously the Executive Director of the US National Bioethics Advisory Commission (1998–2001) and Program Director in the Ethical, Legal and Social Implications (ELSI) program at the National Human Genome Research Institute (1996–97). He has held academic positions at the University of Toronto (1988–96), at Oxford University (1994–95), and was Visiting Professor-at-Large at the University of Western Australia (2008–2010). He has more than 100 publications on topics ranging from international health research to science policy, and has been a consultant to the World Health Organization, the US Observer Mission to UNESCO, and the Canadian Institutes of Health Research. He sits on several boards and committees including the Institute of Medicine's Committee on Ethical and Scientific Issues in Studying the Safety of Approved Drugs; the Stem Cell Oversight Committee of the Juvenile Diabetes Research Foundation; and the Board of Directors of Genome Canada. On May 9, 2007 he was appointed a Chevalier de L'Order Nationale du Mérite (Knight of the National Order of Merit) by the President of France.
Eva Winkler, MD, received her doctoral degree in cancer research from the German Center for Cancer Research in Heidelberg and is a PhD student in Medicine and Healthcare Ethics at the University of Basel. She works as a physician at the Department of Haematology and Oncology at the University Hospital, Munich. She held two Fellowship Positions in Ethics: one at the Division of Medical Ethics, Harvard Medical School and as Faculty Fellow at the Harvard Center for Ethics and the Professions, Harvard University. Her interests in health care ethics focus on organizational ethics, resource allocation and end-of-life decision making. She chairs the medical ethics study group within the Munich Competence Center for Ethics and the Ethics Working group of the German Society for Haematology and Oncology.
Gamal Serour, FRCOG, FRCS, FACOG MD Cairo University 1963; MRCOG 1970; FRCS 1972; FRCOG 1990, FACOG 2009, Professor of Obstetrics and Gynecology, Director, International Islamic Center For Population Studies and Research (IICPSR), former Chairman of Obstetrics and Gynaecology department, and former Dean, Faculty of Medicine, Al Azhar University. He led the work on reproductive heath, population policy, population education, women's and children's rights, empowerment of women and medical ethics in developing countries through projects with UN organizations, NGOS, European governments and USAID. He served as a member of many committees at WHO, UNFPA, UNENSCO, FIGO, IFFS, IPPF and IAB. He has authored and co-authored 368 papers, 28 chapters and 18 books in national and international publications is a reviewer and member of the Editorial Board of several international Ob/Gyn, human reproduction, population science and ethics Journals and has been an invited and keynote speaker in a large number of national, regional and international conferences. Currently he is President of The International Federation of Gynecology and Obstetrics (FIGO) 2009–12.
[Page xiii]Georg Bosshard, MD, MAE, is a family physician and geriatrician in Winterthur, Switzerland, and Associate Professor (Privatdozent) of clinical ethics at the University of Zurich. He is a member of the Central Ethics Committee of the Swiss Academy of Medical Sciences (SAMW). Bosshard has published numerous articles and book chapters on ethical and empirical issues in the field of medical end-of-life decisions and assisted dying. His work was awarded the Vontobel-Award for research in Gerontology 2005, and the University of Zurich's Stehr-Boldt-Award for Medical Ethics in 2007.
Henk ten Have is Professor and Director of the Center for Healthcare Ethics at Duquesne University, Pittsburgh, USA. He held positions in the Universities of Maastricht and Nijmegen, the Netherlands. He has been Director of the Division of Ethics of Science and Technology at UNESCO, Paris, France. He is editor-in-chief of Medicine, Healthcare and Philosophy. He has published 28 books, including The ethics of palliative care (2002), The UNESCO Universal Declaration on Bioethics and Human Rights: Background, principles and application (2009) and Bioethiek zonder grenzen Bioethics without borders, in Dutch, 2010).
Hongwen Li is PhD (expected in 2012) candidate in Department of Philosophy in Peking University in China. He was awarded BA (2005) and MA (2008) in philosophy and ethics. He was in summer internship program in Yale University's Interdisciplinary Center for Bioethics in 2007, and a research fellow in Institute of Law and Ethics in Medicine in University of Vienna in 2010. His research interests include bioethics and medical ethics.
Jan Helge Solbakk is trained as a physician and a theologian at the University of Oslo. He holds a PhD in ancient philosophy from the same university. Since 1996 Solbakk has been Professor of Medical Ethics at the Section for Medical Ethics, University of Oslo. In the same period he has been Adjunct Professor of Medical Ethics at the Centre for International Health, University of Bergen. From February 2007 to August 2008 Solbakk served as Chief of Bioethics at the UNESCO Headquarters in Paris. At present Solbakk is Chair of ISSCR's Ethics and Public Policy Committee. Since January 2006 Solbakk is member of an Ethics Committee set up by the European and Developing Countries Clinical Trial Partnership and since August 2008 he has also served as member of UNESCO's Task Force of experts set up in connection with the project Assisting Bioethics Committees. Solbakk is also member of the Biomedical Ethics Funding Committee of the Wellcome Trust, UK. Solbakk has published extensively and is involved in several international research projects dealing with ethics teaching and with the ethical implications of biobanking, genetics, nano-technology, synthetic biology and stem cell research.
Jean-Philippe Cobbaut is Director of the Centre of Medical Ethics of the department of ethics, Catholic University of Lille (France). His research concerns clinical ethics, organizational ethics and public health ethics. He is also member of the researcher unit dedicated to disability, aging and participation (HaDePas) at the [Page xiv]Catholic University of Lille and member of the research group HELESI (Health, Ethics, Law, Economics and Social Issues), IRSS, Louvain University (Belgium).
Julie Samuël, LLM, is a lawyer and has a Master's Degree in Law and Biotechnology from the Université de Montréal. Her thesis analyzes the obligation and the liability of doctors in the context of sport doping. She also has a background in Health Law from the Université de Sherbrooke, where she studied the concept of wrongful birth. Ms. Samuël obtained a scholarship from the Canadian Chair of Research in Law and Medicine to do an internship at the International Olympic Committee, in Lausanne. She also obtained an Erasmus Mundus Fellowship to conduct research on paediatric biobanks and genetic testing in sports at the Katholieke Universiteit Leuven, in Belgium. She worked for five years as a Professional Associate for the Université de Montréal (CRDP) and McGill University (CGP). Her research focused on issues related to paediatric research, such as the participation of children in genetic research, biobanks and gene therapy. She is now in-house counsel at the Fonds de la recherche en santé du Québec.
Kadri Simm is a Senior Researcher at the Institute of Philosophy and Semiotics, University of Tartu. Her background lies in philosophy, gender studies and history. She has participated in numerous national and international research projects and her research interests lie in moral and political philosophy, feminist studies, global justice issues, bioethics and science and technology studies.
Kenneth Cornetta, MD, is the Joe C. Christian Professor and Chair of the Department of Medical and Molecular Genetics, Indiana University School of Medicine. Prior to his position as chairman, he directed the Indiana University Bone Marrow Transplantation Program. His research has focused on the production, certification and clinical application of retroviral and lentiviral vectors. He has published over 100 peer-reviewed papers related to gene therapy and hematopoietic stem cell transplantation. He directs the NIH-supported National Gene Vector Biorepository and his laboratory is the site for clinical lentiviral vector production for the NIH's Gene Therapy Resource Program. He previously served as the president of the American Society of Gene Therapy from 2009 to 2010.
Kenneth V. Iserson, MD is Professor Emeritus of Emergency Medicine at the University of Arizona, where he not only practiced and taught medicine, but also directed their very active Bioethics Committee for more than 25 years. With a practice now limited to international and disaster medicine, he was named a Fellow of the International Federation of Emergency Medicine. Domestically, he is Senior Medical Director of the Southern Arizona Rescue Association (search & rescue), a Supervisory Physician with Arizona's Disaster Medical Assistance Team (AZ-1) and a member of the American Red Cross disaster response team. Through numerous NGOs, he has worked clinically, consulted or taught on all seven continents. The author of more than 300 scientific articles on emergency medicine and biomedical ethics, he has also authored numerous books, including Ethics in Emergency Medicine, Grave Words: Notifying Survivors of Sudden, Unexpected Death, and the award-winning Death to Dust: What Happens to Dead Bodies? His newest book, [Page xv]Improvised Medicine: Delivering Care with Limited Resources, will be published in 2011.
Kenneth W. Goodman directs the University of Miami Bioethics Program, a World Health Organization Collaborating Center in Ethics and Global Health Policy. He is Professor of Medicine and jointly of Philosophy, Electrical Engineering, Epidemiology and Public Health and Nursing and Health Studies. A Fellow of the American College of Medical Informatics, he has published a number of books and articles on ethics and health information technology. He has also written about ethics and evidence-based medicine and other topics in bioethics, the philosophy of science, and computing. He is co-principal investigator on the Pan American Bioethics Initiative, a US National Institutes of Health Fogarty International Center grant to support research ethics education in Latin America and the Caribbean.
Kris Dierickx is professor of biomedical ethics at the Centre for Biomedical Ethics and Law (Faculty of Medicine, K.U. Leuven). He co-ordinated the GeneBanC project (2006–09) funded by the European Commission. He has published more than 100 internationally reviewed articles and 8 books as author or editor on ethics and genetics, regenerative medicine, biobanks, reproductive medicine and research ethics. He is involved in several European research projects and acts as a reviewer for many international journals. He is member of ethics committees and reviewer for the Seventh Framework of the European Commission.
Lars Johan Materstvedt holds a PhD in political philosophy on the libertarianism of US philosopher Robert Nozick. He is Profressor at the Department of Philosophy, Norwegian University of Science and Technology (NTNU), Trondheim, Norway, where he teaches history of philosophy, theory of science, metaethics, normative ethics and medical ethics. As a Postdoctoral Research Fellow with the Norwegian Cancer Society he carried out research on the relationship between euthanasia and palliative medicine, which included conducting interviews with terminally ill cancer patients about their attitudes towards euthanasia and physician-assisted suicide. He chaired the Ethics Task Force on Palliative Care and Euthanasia of the European Association for Palliative Care (EAPC). His most recent publications include Materstvedt LJ, Bosshard G. (2009) ‘Deep and continuous palliative sedation (terminal sedation): clinical-ethical and philosophical aspects’. The Lancet Oncology, 10; 6: 622–7, and Materstvedt LJ, Bosshard G. (2010) ‘Euthanasia and physicianassisted suicide’. Chap. 5.5 in Hanks G, Cherny N, Christakis N, Fallon MT, Kaasa S, Portenoy RK, eds. Oxford Textbook of Palliative Medicine, 4th edn. Oxford: Oxford University Press.
Leonardo D. de Castro is Senior Research Fellow at the National University of Singapore's Centre for Biomedical Ethics. He is Editor-in-Chief, Asian Bioethics Review. A member of the UNESCO Advisory Expert Committee for the Teaching of Ethics. He is also President of the Asian Bioethics Association, Chair of the Philippine Health Research Ethics Board and Secretary of the International Association of Bioethics. Having previously served as Vice Chair of the UNESCO [Page xvi]International Bioethics Committee, he currently represents the Philippines in the UNESCO Intergovernmental Bioethics Committee.
Margit Sutrop is Professor of Practical Philosophy, Head of the Institute of Philosophy and Semiotics and the founding Director of the interdisciplinary Centre for Ethics at Tartu University. She has studied and worked in the universities of Oxford, Oslo, Konstanz and Tartu. She has published 13 books as author or editor and numerous articles, especially on fiction and imagination, trust in science, ethical frameworks of genetic databases, pharmacogenetics and ethical issues of biometrics. She has held numerous national and international grants from the European Commission (5th, 6th, 7th FP), as well as from UNESCO, Volkswagen Stiftung, European Economic Area, NorFa, Nordic Spaces, Estonian Ministry of Education and Research, Estonian Science Foundation, etc. She is a member of the Council of the Academia Europaea, independent ethical expert of the European Commission, as well as a member of the Estonian President's Advisory Board, a member of the Estonian Council of Bioethics, and a member of the Clinical Ethics Committee of Tartu University Clinic.
Michael Davis is Senior Fellow at the Center for the Study of Ethics in the Professions and Professor of Philosophy, Illinois Institute of Technology, Chicago, IL 60616. Among his recent publications are: Thinking Like an Engineer (Oxford, 1998); Ethics and the University (Routledge, 1999); Conflict of Interest in the Professions (Oxford, 2001); Profession, Code, and Ethics (Ashgate, 2002); Actual Social Contract and Political Obligation (Mellen, 2002); Engineering Ethics (Ashgate, 2005); Code Writing: How Software Engineering Became a Profession (Center for the Study of Ethics in the Professions, 2007); and Ethics and the Legal Profession, 2nd (Prometheus, 2009). Since 1990, he has received four grants from the National Science Foundation to help integrate ethics into technical courses.
Michael McDonald is Maurice Young Professor of Applied Ethics at the University of British Columbia and the founding director of the W. Maurice Young Centre for Applied Ethics. McDonald heads the Canadian Network for the Ethical Governance of Research Involving Humans. He was Deputy Chair of the committee that created Canada's policy for research involving humans. He also served as Co-Chair of the Canadian Institute for Health Research's Standing Committee on Ethics and as a member of numerous Canadian committees and research teams on ethics and health research. In 2009, he received a Distinguished Lifetime Achievement Award in recognition of his leadership role in establishing national programs in applied ethics and bioethics. McDonald has published widely in ethical theory, political philosophy, bioethics and business ethics.
Michiel Korthals is Professor of Applied Philosophy at Wageningen University. He studied Philosophy, Sociology, German and Anthropology at the University of Amsterdam and the Karl Ruprecht Universität in Heidelberg. His academic interests include bioethics and ethical problems concerning food production and environmental issues, deliberative theories, and American pragmatism. Main publications: Philosophy of Development (Kluwer, 1996 with Wouter van Haaften and Thomas [Page xvii]Wren), Pragmatist Ethics for a Technological Culture (with Keulartz et. al.; Kluwer 2002), Ethics for Life Sciences (Springer, 2005), Before Dinner. Philosophy and Ethics of Food (Springer 2004), in 2006, Pépé Grégoire, A Philosophical Interpretation of his Sculptures, Zwolle: Waanders. In 2010 will appear Genomics, Obesity and the Struggle over Responsibilities (Springer).
Nina Preto is a doctoral candidate at the W. Maurice Young Centre for Applied Ethics at the University of British Columbia. She practised law prior to pursuing graduate studies in research ethics. She serves on the behavioral research ethics board at the University of British Columbia. Ms. Preto was also a board member of the Provincial Health Ethics Network of Alberta [“PHEN”] for three years, during which time she helped coordinate the development of materials on end-of-life decision making for the Alberta public. Her doctoral work explores how contract research organizations impact the conduct of clinical trials at community-based investigative sites and academic health centers, with a specific focus on the identification and management of ethical issues including conflicts of interest.
Paul McCarthy is a Research Associate and Lecturer at Lancaster University. He is based in Cesagen, Lancaster where he co-leads the research programme on ‘Therapies and Enhancement’. This involves a number of researchers at Lancaster and Cardiff University working on projects in Genomics, Food and Agriculture, Translating Research and Genomics and Convergent Technologies. He also manages Cesagen's European projects dealing with issues in Genomics and other novel technological fields and is involved in advising the Commission on ethical issues in the global governance of science. He also leads Cesagen's strategy of developing collaborations in China including work on Traditional Chinese Medicine and other activities, such as public engagement events, with genomic researchers across the country.
Paul Ndebele is Assistant Director for Research Ethics at University of Botswana. He has held Research Ethics related positions at Medical Research Council of Zimbabwe, Michigan State University, University of Malawi and Africa University in Zimbabwe. He is a member of the National Research Ethics Committee for Botswana and he serves as Secretary for the University of Botswana Institutional Review Board, Animal Care and Use Committee and the Hazardous Materials Sub-Committee. Besides his appointment at University of Botswana, he currently serves as an Honorary Lecturer at College of Medicine, University of Malawi; part-time Lecturer at Africa University; and Adjunct Instructor at Michigan State University. Paul has a number of publications in the area of Research Ethics and serves as an Editorial Board member for four journals.
Paul Schotsmans is Ordinarius Professor of Medical Ethics at the Catholic University of Leuven and currently Vice-Dean of the Faculty of Medicine at the same university. He has participated in several European research projects (e.g. on persistent vegetative state patients, on palliative care, on reproductive technologies, and others). He was President of the European Association of Centres of Medical Ethics and Board Member of the International Association of Bioethics. He was [Page xviii]also President of the Ethics Committee of Eurotransplant. He is currently President of the Belgian Advisory Committee on Bioethics. He has published mainly in the context of the application of ‘personalism’ as an ethical model for the ethical integration of reproductive technologies, stem cell research, organ transplantation and end-of-life decision making.
Peter A. Sy is Associate Professor of Philosophy, College of Social Sciences and Philosophy, University of the Philippines, Diliman, Quezon City. He is the Executive Officer of the International Association of Bioethics (IAB) and a research consultant of the Public Assessment of Water Services (PAWS), National Engineering Center, University of the Philippines. He has been a Research Fellow in Ethical Issues in International Research at the School of Public Health, Harvard University.
Pierre Boitte is professor of Medical Ethics at the Medical School and senior researcher at the Centre of Medical Ethics of the Department of Ethics, Catholic University of Lille (France). His research concerns clinical ethics, research ethics, and end-of-life ethics. He is a member of the European Clinical Ethics Network (ECEN) and also a member of the researcher unit dedicated to disability, aging and participation (HaDePas) at the Catholic University of Lille.
Rachel Cooper is Senior Lecturer in Philosophy at the University of Lancaster. Her publications include Classifying Madness: A Philosophical Examination of the Diagnostic and Statistical Manual of Mental Disorders (Springer, 2005) and Psychiatry and the Philosophy of Science (Acumen, 2007) and she is now working on monographs on the concept of disorder, and on the DSM-V. From 2007 to 2010 she was Honorary Secretary of the British Society for the Philosophy of Science. She is currently co-managing (with Havi Carel, UWE) an AHRC Research Network on Concepts of Health, Illness and Disease.
Rob de Vries studied Biology and Philosophy. He wrote a PhD thesis on the ethics of the genetic engineering of laboratory animals. From 2007 to 2009, he was a postdoctoral researcher at the Department of Ethics, Philosophy and History of Medicine at the Radboud University Nijmegen Medical Centre. There he carried out a research project, funded by the Dutch Program Tissue Engineering, on the ethical aspects of tissue engineering and regenerative medicine. He currently works at the 3R Research Centre of the Radboud University Nijmegen Medical Centre on a project on systematic reviews of animal research.
Roberto Andorno is Senior Research Fellow and Lecturer at the Institute of Biomedical Ethics of the University of Zurich, Switzerland. Originally from Argentina, he holds doctoral degrees in law from the Universities of Buenos Aires and Paris XII, both on topics related to the ethical and legal aspects of assisted reproductive technologies. Between 1999 and 2005, he conducted various research projects relating to bioethics, human dignity and human rights at the Faculty of Philosophy of the University Laval (Canada), as well as at the Universities of Göttingen and Tübingen (Germany). Dr. Andorno served as a member of the International Bioethics Committee of UNESCO (1998–2005) and participated in [Page xix]this capacity in the drafting of international declarations and reports relating to bioethics. He has published extensively on issues at the intersection of bioethics and law, and is a member of the editorial boards of various journals, including Medicine, Health Care & Philosophy, Journal International de Bioéthique, and Bioethica Forum.
Ruth Chadwick is Distinguished Research Professor at Cardiff University and Director of Cesagen. She held positions in Liverpool, Cardiff, Preston and Lancaster before joining the university in 2006. She co-ordinated the Euroscreen projects (1994–96; 1996–99) funded by the European Commission. She co-edits the journal Bioethics, and is co-editor of the online journal Genomics, Society and Policy. She has published 20 books as author or editor, including the award winning Encyclopaedia of Applied Ethics (1998). She is Chair of the Human Genome Organisation (HUGO) Ethics Committee, Fellow of the Hastings Center, New York, and is an Academician of the Academy of Social Sciences. She has served as a member of the Food Ethics Council, the Advisory Committee on Novel Foods and Process (ACNFP), the Standing Committee on Ethics of the Canadian Institute of Health Research, and the Medical Research Council Advisory Committee on DNA Banking.
Ruud ter Meulen is a psychologist and ethicist. He is Chair for Ethics of Medicine and Director of the Centre for Ethics in Medicine at the University of Bristol. Previously he worked as Professor of Philosophy and Director of the Institute for Bioethics at the University of Maastricht. He has published on a wide range of issues in medical ethics, including solidarity and justice in health care, ethical issues of health care reform and health policy, ethics of evidence-based medicine, and ethical issues of long-term care for older people. He was Principal Investigator of a large number of EU projects like the EVIBASE and ENHANCE project, and was member of the Advisory Group of the Science in Society Program of the European Commission. He was member of the Working Party of the Nuffield Council on Dementia: Ethical Issues, and is a member of the Board of Directors of the European Association of Centres for Medical Ethics (EACME).
Teoh Chin Leong is Research Fellow at the National University of Singapore's Centre for Biomedical Ethics, assisting with the development of outreach programs with a special focus on public education and bioethics education in schools. With interests in ethical, political and educational theory and practice, he is currently pursuing his doctoral studies at the Yong Loo Lin School of Medicine at the National University of Singapore.
Thomas Faunce, BA/LLB (Hons), B Med PhD, is an Australian Research Council (ARC) Future Fellow jointly in the College of Law and College of Medicine, Biology and the Environment at the Australian National University. He served as Judges Associate to Justice Lionel Murphy of the Australian High Court and worked as a barrister and solicitor in Australia's two largest legal firms. He then practised intensive care medicine for twelve years in Wagga Wagga, Canberra and Melbourne. His PhD on regulation of the Human Genome Project was awarded the Crawford Prize. He has directed three ARC competitive research grants in the area of health technology regulation. He is an associate editor with Medical Humanities (UK) and [Page xx]edits the medical law reporter for the Journal of Law and Medicine. His latest book with Edward Elgar is on nanotechnology and global public health.
Tsuyoshi Awaya, Bsc, LLM, PhD, is a research professor of bioethics and medical law ‘only’ in the Department of Bioethics, Graduate School of Medicine, Dentistry and Pharmaceutical Sciences, Okayama University, Japan. He was a member of David Rothman's team, which produced the Bellagio Task Force Report on Transplantation, Bodily Integrity, and the International Traffic in Organs (1997). At present, he is a member of the Board of Directors of the Japan Association for Bioethics and President of the International Society for Clinical Bioethics (ISCB). He has published about 30 books as author, editor or co-author. He has been doing field research on organ trade in the Philippines and in India since 1992 and about the commodification of the human body in the USA since 1996. He consequently wrote The Human Body Parts Business (Kodansha, Japan, 1999). The book became a best seller in its field. It was translated into Chinese for sale in Taiwan in 2002. He has been doing field research on transplantation of organs from executed prisoners in China since 1995. In the course of his research, he was expelled from China in 1997. He testified on this topic before the US Congress in 1998.
Vilhjálmur Árnason is Professor of Philosophy and Chair of the Centre for Ethics at the University of Iceland. He co-ordinated the ELSAGEN project (2002–04) funded by the European Commission. He was a board member of the European Society for Philosophy of Medicine and Health Care 2004–10 and of The Nordic Bioethics Committee 2005–10. He is the author of four books on moral philosophy and applied ethics in Icelandic, one of which has been translated into German. He has published numerous articles in the field of bioethics, ethical theory and social philosophy, and edited several books in Icelandic and English. He is a member of the editorial teams of Medicine, Health Care and Philosophy, Genomics and Society, and Etikk i Praksis — a Nordic Journal. He is life member of Clare Hall, Cambridge University (2006) and of the Alexander von Humboldt Foundation (1993).
Vittorio Hosle is the Paul Kimball Professor of Arts and Letters in the Departments of German, Philosophy and Political Science at the University of Notre Dame and the Director of the Notre Dame Institute for Advanced Study. He has written or (co-)edited more than 30 books and has published more than 120 articles.
Volnei Garrafa, PhD, Full Professor of the Faculty of Health Sciences of the University of Brasília, Brazil. Chairman of the UNESCO's Cathedra of Bioethics and of the Post-Graduate Programme (Master and Doctorate) in Bioethics of the University of Brasília. President of the Latin-American and Caribbean Network of Bioethics (2003–10); Editor in Chief of the Brazilian Journal of Bioethics; Member of the International Bioethics Committee of the UNESCO (2010–13). Former President of the Brazilian Society of Bioethics (2001–05); President of the Sixth World Congress on Bioethics of the International Association of Bioethics — Brasília, Brazil, 2002.
[Page xxi]Yali Cong is Professor and Director of Department of Medical Humanities in Peking University Health Science Center (PUHSC) in China. She got BS (1989) in biology, MA (1992) and PhD (1995) in philosophy of science. She is Vice Director of China-US Center for Medical Professionalism of PUHSC, Secretary of Association of Medical Ethics in Chinese Medical Association, Secretary of Center for Applied Ethics in Peking University and Vice Chair of Education Group of Beijing Medical Ethics Association. She is a member of the Editor Committee of Chinese Journal of Medicine and Philosophy. She has written many papers on medical ethics and bioethics both in Chinese and English. In recent years, she has made great efforts in developing and construction of Institutional Review Boards at different levels.
Yechiel Michael Barilan is a medical doctor, expert in internal medicine and senior lecturer in the Department of Medical Education, Sackler Faculty of Medicine, Tel Aviv University, Israel. He has published extensively on the social history of bioethical issues, Jewish bioethics, human rights and moral psychology, especially as applied to medical education. He teaches in Israel and Europe and has participated in various national and international bioethical committees.