Genetics, Disability and the Law

Aisling de Paor is a lecturer in Law at Dublin City University. She is a qualified solicitor and an honorary research fellow with the Burton Blatt Institute at Syracuse University, New York. She was previously a visiting scholar here in 2012 and 2014, and a part-time lecturer in Law at National University of Ireland, Galway (2009–14). She has published in numerous journal articles in the fields of genetics law and policy, medical law and disability law, including the European Journal of Health Law. She is also co-editor of Genetic Discrimination: Transatlantic Perspectives on the Case for a European Level Legal Response (2014).

1. Introduction; Part I. New Science and Technology and the Ethical and Legal Issues Arising: 2. Background: advancing genetic science; 3. Ethical implications, legal issues and public policy concerns of advancing genetic technology; 4. A disability framework - the interface of the social model of disability with the evolution of genetic science; Part II. The Imperative for Regulation and the Choice of Regulator Theory and Frameworks: 5. Mode of regulation and choice of regulatory frameworks in legal theory; 6. Framings from international human rights law; 7. Evolving comparative law benchmarks; Part III. The European Perspective: 8. Human rights norms in the Council of Europe and the regulation of genetic information; 9. The European Union and protection of genetic information; Part IV. Building the Case for a European Union Regulatory Framework: 10. National level approaches - a patchwork of protections; 11. A case for European Union level action; 12. Conclusion - where next for the EU?