The Connected Self: The Ethics and Governance of the Genetic Individual

Description

Currently, the ethics infrastructure - from medical and scientific training to the scrutiny of ethics committees - focuses on trying to reform informed consent to do a job which it is simply not capable of doing. Consent, or choice, is not an effective ethical tool in public ethics and is particularly problematic in the governance of genetics. Heather Widdows suggests using alternative and additional ethical tools and argues that if individuals are to flourish it is necessary to recognise and respect communal and public goods as well as individual goods. To do this she suggests a two-step process - the 'ethical toolbox'. First the harms and goods of the particular situation are assessed and then appropriate practices are put in place to protect goods and prevent harms. This debate speaks to core concerns of contemporary public ethics and suggests a means to identify and prioritise public and common goods.

Heather Widdows is a Professor in the philosophy department at the University of Birmingham, where she teaches moral philosophy, bioethics, global ethics and health and happiness.

'Widdows' argument ... not only clearly demonstrates the need for new ways of thinking about contemporary issues in genetics and genomics, but also highlights the ways in which ethics itself co-evolves with science.' Ruth Chadwick, Distinguished Research Professor, Cardiff University and Director, Cesagen 'If bioethics is to be less blinkered, it needs a new approach - one that collects the required 'tools' and then applies them in a way that is responsive to the full range of material harms and goods. The Connected Self is a compelling read.' Roger Brownsword, Kings College London and Chair, UK Biobank Ethics and Governance Council 'With a battery of philosophical arguments, Widdows soon convinces the reader that our current ethical framework, the choice model, has to go ... Informative, scholarly and yet extremely accessible.' Lisa Bortolotti, Birmingham University 'In setting out how genetics makes ethical individualism redundant - itself an important and timely argument - Heather Widdows at the same time puts neo-liberal 'morality' firmly in its place.' Bob Brecher, University of Brighton 'Provides a strong and urgently needed call to 'clean up our act' as regards the ethical governance of genetics ... Reading this book reminded me why I became an ethicist.' Sigrid Sterckx, Ghent University 'As with all good ethicists, Widdows takes on the ambitious, substantive, and difficult task of offering a foundation for ethical inquiry. Her main contention is that individualistic ethical frameworks are fundamentally flawed because individuals are incomplete, and are best understood as parts of a community.' William Simkulet, Metapsychology Online Reviews 'In short, there is plenty of room for piqued interests. Perhaps this is ultimately what Widdows wants, and in this sense, The Connected Self shines. Its message is valuable and forces you to think. For our individual and common good, may it ignite impassioned bioethical debate.' Edward S. Dove, New Genetics and Society 'The richness of Widdows' analyses is clear. Her reflections and insights for genetic governance in The Connected Self should be recommended to emerging practitioners in genomics, law and/or health policy. No doubt, the book makes a valuable contribution to the movement towards a more inclusionary, reflexive and contextually embedded bioethics for genetic governance.' Vasiliki Rahimzadeh, Bioethique Online (bioethiqueonline.ca)