Personalised Medicine, Individual Choice and the Common Good

Description

Hippocrates famously advised doctors 'it is far more important to know what person the disease has than what disease the person has'. Yet 2,500 years later, 'personalised medicine', based on individual genetic profiling and the achievements of genomic research, claims to be revolutionary. In this book, experts from a wide range of disciplines critically examine this claim. They expand the discussion of personalised medicine beyond its usual scope to include many other highly topical issues, including: human nuclear genome transfer ('three-parent IVF'), stem cell-derived gametes, private umbilical cord blood banking, international trade in human organs, biobanks such as the US Precision Medicine Initiative, direct-to-consumer genetic testing, health and fitness self-monitoring. Although these technologies often prioritise individual choice, the original ideal of genomic research saw the human genome as 'the common heritage of humanity'. The authors question whether personalised medicine actually threatens this conception of the common good.

Britta van Beers is Associate Professor at Vrije Universiteit, Amsterdam. As a legal philosopher she explores the notions of personhood and corporality within the regulation of biomedical technologies, such as assisted reproductive technologies, markets in human body materials and biomedical tourism. In 2011 she received the Praemium Erasmianum Research Prize for her Ph.D. dissertation on the legal relationship between persons and their bodies in the era of medical biotechnology (2009). Recent publications include the co-edited volumes Humanity in International Law and Biolaw (Cambridge, 2014) and Symbolic Legislation and Developments in Biolaw (2016). Sigrid Sterckx is a founding member of the Bioethics Institute, Ghent. Her current research projects focus on ethical and legal aspects of: human tissue research and biobanking; patenting in biomedicine and genomics; organ transplantation; medical end-of-life practices; neuroethics; and global justice. She has published more than 150 articles, book chapters and books on these issues, including the co-authored book Exclusions from Patentability (Cambridge, 2012) and the co-edited volume Continuous Sedation at the End of Life: Ethical, Clinical and Legal Perspectives (Cambridge, 2013). Sigrid also serves on various advisory committees, including the Ethics Committee of the Universiteit Gent Hospital. Donna Dickenson is the author of one of the earliest books taking a balanced critical stance on personalised medicine, Me Medicine vs. We Medicine: Reclaiming Biotechnology for the Common Good (2013). She is Emeritus Professor of Medical Ethics and Humanities at Birkbeck College, University of London and Research Associate at the HeLEX Centre at the University of Oxford. Previously she taught at Imperial College School of Medicine, London. For many years she served on the Ethics Committee of the UK Royal College of Obstetricians and Gynaecologists. She has written or edited twenty-five books, as well as over one hundred articles or chapters. In 2006 she became the first woman to win the international Spinoza Lens Award for her contribution to public debate on current ethical issues about the impact of biotechnology on our society.

'This volume illuminates the fundamental tension between the individualistic promises of personalized medicine and the demands of social justice. Moreover, it follows this moral fault-line well beyond the territory of applied human genomics, to show how it runs through biomedical practices ranging from infertility treatments, umbilical cord blood banking, and organ transplantion, all the way to how we care for people with Alzheimer Disease and use personal fitness apps to care for ourselves. In the process the volume nicely illustrates why applied genomics cannot expect to outrun this tension by reinventing itself as a 'precision' approach to resolving public health inequities. By demonstrating the ubiquity of the 'me/we' tension in the ways our society thinks about and pursues health, the book challenges the reader to consider personalized medicine and 'precision healthcare' as exemplars of rather than alternatives to modern biomedicine's conventional set of ethical commitments.' Eric Thomas Juengst, University of North Carolina School of Medicine 'This important book Personalised Medicine, Individual Choice and the Common Good intervenes in one of the most important debates of our time - and that is access to health care. This is a global matter and it touches virtually every area of human need and desire from organ transplantation to assisted reproduction. This book confronts both our desires and demands and explores the costs of giving the people what they want.' Michele Goodwin, University of California 'This rich collection of essays is a tribute to the generative powers and explanatory scope that co-editor Donna Dickenson's 'Me Medicine versus We Medicine' framework provides. The volume's authors and editors offer trenchant insights into the social, cultural, and market dynamics that underlie the hypertrophy of practices and products shaped by 'Me Medicine', piercing inflated promises and carefully mapping the repercussions for individual patients and for our commitments to public health. Not least, they also chart a hopeful course for future efforts to better balance individual choice and the common good.' Marcy Darnovsky, Center for Genetics and Society 'The contributors to this volume largely offer a counter-narrative to the hype [about personalized medicine]. Assessing personalized medicine from legal, public health, human rights, feminist, technological, ethical, economic, political, and philosophical perspectives, the authors unpack its benefits and potential harms. In doing so, most of them deploy to good effect an incisive heuristic advanced several years ago by Donna Dickenson that divides health research and care into two approaches dubbed 'We Medicine' and 'Me Medicine.'' Gina Maranto, Biopolitical Times 'The multidisciplinary perspectives offered in this book will make it of interest to a variety of audiences, especially bioethics, law, and philosophy students and academics. It will also be of interest to other scholars studying the intersection of medicine, society, and politics, such as political scientists and communications experts.' Maya Sabatello, Hastings Center Report