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While advances in science and technology bring many advantages, we must not ignore the harm that they can cause. Rapid changes in genetic testing are a prime example, and indicators can now help to detect, address and treat diseases. However, in this new study, Aisling de Paor examines how genetic testing is also being used for non-medical reasons, for example for work opportunities and insurance coverage. Genetics, Disability and the Law is the first book of its kind to substantively consider an EU-level response to the use of genetic information. de Paor discusses how to help genetic and scientific research to evolve and grow, how to enhance public confidence in research, and how to control it so that it recognises our values and fundamental human rights. An understudied but vitally important topic, de Paor's work provides a valuable and timely contribution to the field of disability rights.
While advances in science and technology bring many advantages, we must not ignore the harm that they can cause. Rapid changes in genetic testing are a prime example, and indicators can now help to detect, address and treat diseases. However, in this new study, Aisling de Paor examines how genetic testing is also being used for non-medical reasons, for example for work opportunities and insurance coverage. Genetics, Disability and the Law is the first book of its kind to substantively consider an EU-level response to the use of genetic information. de Paor discusses how to help genetic and scientific research to evolve and grow, how to enhance public confidence in research, and how to control it so that it recognises our values and fundamental human rights. An understudied but vitally important topic, de Paor's work provides a valuable and timely contribution to the field of disability rights.
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?
With genetic technologies advancing rapidly, Aisling de Paor examines the urgent need for an EU-level framework to regulate genetic information.
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).
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