This volume maps the areas of ethical concern in the debate regarding the governance of genetic information, and suggests alternative ethical frameworks and models of regulation in order to inform its restructuring. Genetic governance is at the heart of medical and scientific developments, and is connected to global exploitation, issues of commodification, commercialisation and ownership, the concepts of property and intellectual property and concerns about individual and communal identity. Thus the decisions that are made in the next few years about appropriate models of genetic governance will have knock-on effects for other areas of governance. In short the final answer to 'Who Decides?' in the context of genetic governance will fundamentally shape the ethical constructs of individuals and their networks and relationships in the public sphere.
• Contributes to the discussion surrounding the regulation of genetic information, a subject which affects health, welfare and identity • Bases discussion of practice on accounts of fundamental theoretical issues, an original approach to the topic • Provides a multi-disciplinary account of the subject, taking in law, philosophy, applied ethics and social science
Introduction Heather Widdows and Caroline Mullen; Section I. Problematising Governance of Genetic Information: 1. The medium and the message: tissue samples, genetic information and data protection legislation Neil C. Manson; 2. Me, myself, I: against narcissism in the governance of genetic information Søren Holm; 3. Decisions, consent and expectations of the individual Caroline Mullen; Section II. Ethical Frameworks of Governance: 4. Constructing communal models of governance: collectives of individuals or distinct ethical loci? Heather Widdows; 5. Rights, responsibility and stewardship: beyond consent Roger Brownsword; 6. Who decides what? Relational ethics, genetics and well-being Sarah Wilson; Section III. Redesigning Governance: 7. Involving publics in biobank governance: moving beyond existing approaches Kathryn G. Hunter and Graeme T. Laurie; 8. Genetic information and public opinion Andrew Edgar; 9. Harmonisation and standardisation in ethics and governance: Conceptual and practical challenges Ruth Chadwick and Heather Strange.