Genetics, Disability and the Law
Towards an EU Legal Framework

With genetic technologies advancing rapidly, Aisling de Paor examines the urgent need for an EU-level framework to regulate genetic information.

Aisling de Paor (Author)

9781107127579, Cambridge University Press

Hardback, published 21 September 2017

330 pages
23.5 x 15.7 x 2.1 cm, 0.59 kg

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?

Subject Areas: Medical & healthcare law [LNTM], EU & European institutions [JPSN2]