The Governance of Genetic Information

Dr Heather Widdows is a Senior Lecturer in the Department of Philosophy at the University of Birmingham, where she teaches moral philosophy and bioethics. Dr Caroline Mullen is a research officer at the Centre for European Law and Legal Studies, School of Law, University of Leeds.

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.