Genetics, Disability, and the Law: Towards an EU Legal Framework

Author: Aisling de Paor
Publisher: Cambridge University Press
ISBN: 9781107566804

Published In: December 2018
Format: Paperback
Jurisdiction: U.K. ? Disclaimer:
Countri(es) stated herein are used as reference only
Hardback Edition ISBN: 9781107127579

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Description
Contents

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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.

Presents a practical consideration of an EU-level legislative response to controlling the use and misuse of genetic information, appealing to those involved in the regulation of this field
Takes a human rights and disability approach to consider the regulation of genetic information, which will interest scholars and policymakers from a variety of disciplines, in particular because it considers the intersection of disability and genetics
Considers normative and non-normative attitudes to the regulation of genetic information, giving readers a new and varied insight

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