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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.
List of contents
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?
About the author
Babtiste de Pape war Jurist, bevor er Autor und Filmemacher wurde.
Summary
This book presents an investigation into the need for an EU-level framework to regulate genetic information. It is ideal for legal and medical scholars and practitioners, and those interested in genetic testing and the ethical, legal and regulatory implications. It is a source of reference for policymakers and a vital contribution to law reform and legislative initiatives.
