This book addresses the problem of how to make democratically-legitimate public policy on issues of contentious bioethical debate. It focuses on ethical contests about research and their legitimate resolution, while addressing questions of political legitimacy. How should states make public policy on issues where there is ethical disagreement, not only about appropriate outcomes, but even what values are at stake? What constitutes justified, democratic policy in such conflicted domains? Case studies from Canada and Australia demonstrate that two countries sharing historical and institutional characteristics can reach different policy responses.
This book is of interest to policymakers, bioethicists, and philosophers, and will deepen our understanding of the interactions between large-scale socio-political forces and detailed policy problems in bioethics.
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Table des matières
1 Introduction; Susan Dodds and Rachel A. Ankeny.- Section I Seeing the Big Picture: Democratically Defensible Policy Development in Liberal Democracies.- 2 ‘Big Picture’ Manifesto: Democratic Policy Making in Contested Domains; Susan Dodds and Rachel A. Ankeny.- 3 Participation and Trust: Conditions and Constraints on Democratic Deliberation; Susan Dodds.- 4 Conscience Votes in Australia: Deliberation and Representation; Kerry Ross, Susan Dodds and Rachel A. Ankeny.- 5 Deliberative Processes in Practice; Cobi Smith and Gene Rowe.- Section II Regulation of Embryo Research.- 6 Policy design for Human Embryo Research in Canada: 1989-2015; Françoise Baylis and Matthew Herder.- 7 Public Engagement and Deliberation in Human Embryo Research Governance in Australia 2001-2011; Susan Dodds and Rachel A. Ankeny.- Section III Human Research Ethics Guidelines.- 8 The Tunnel at the End of the Light? Development of the Tri Council Policy Statement in Canada; Jocelyn G. Downie and Cheluchi Onyemelukwe.- 9 Human Research Ethics Guidelines in Australia; Colin Thomson, Kerry Breen and Donald Chalmers.- 10 Consultation, Deliberation and the Review of the National Statement; Eliza Goddard and Susan Dodds.- Section IV Deliberating About Emerging Health Policy.- 11 Three Approaches to Chronic Fatigue Syndrome in the United Kingdom, Australia, and Canada: Lessons for Democratic Policy; Rachel A. Ankeny and Fiona J. Mackenzie.- 12 Seeking Community Views on Allocation of Scarce Resources in a Pandemic in Australia: Two Methods, Two Answers; Jackie M. Street, Helen Marshall, Annette J. Braunack-Mayer, Wendy A. Rogers, Philip Ryan and the Flu Views Team.- 13 Assessing Deliberative Design of Public Input on British Columbia Biobanks; Michael M. Burgess, Holly Longstaff and Kieren O’Doherty
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