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

Aisling de Paor

doi:10.1017/9781316412336

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.

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Contents

Genetics, Disability and the Law
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Cambridge Disability Law and Policy Series - Series page
pp i-vi
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Genetics, Disability and the Law - Title page
pp i-vi
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Copyright page
pp i-vi
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Contents
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Cases
pp vii-x
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Legislation
pp xi-xiv
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1 - Introduction
pp xv-xxii
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Part I - New Science and Technology and the Arising Ethical and Legal Issues
pp 1-10
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2 - Advancing Genetic Science and New Technologies
pp 11-12
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3 - Ethical Issues, Legal Issues and Public Policy Concerns in a New Genomic Era
pp 13-39
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4 - A Disability Framework – The Interface of the Social Model of Disability with the Evolution of Genetic Science
pp 40-91
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Part II - The Imperative for Regulation and the Choice of Regulatory Theory and Frameworks
pp 92-106
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5 - Mode of Regulation and Choice of Regulatory Frameworks in Legal Theory
pp 107-108
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6 - Framings from International Human Rights Law
pp 109-141
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7 - Evolving Comparative Law Benchmarks
pp 142-169
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Part III - The European Perspective
pp 170-204
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8 - Human Rights Norms in the Council of Europe and the Regulation of Genetic Information
pp 205-206
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9 - The European Union and Protection of Genetic Information
pp 207-223
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Part IV - Building the Case for a European Union Regulatory Framework
pp 224-256
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10 - National-Level Approaches – A Patchwork of Protections
pp 257-258
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11 - Building a Case for European Union Legislative Action
pp 259-270
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12 - Conclusion: Where Next for the European Union?
pp 271-293
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Index
pp 294-298
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Genetics, Disability and the Law

Towards an EU Legal Framework

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Contents

Genetics, Disability and the Law

Cambridge Disability Law and Policy Series - Series page
pp i-vi

Genetics, Disability and the Law - Title page
pp i-vi

Copyright page
pp i-vi

Contents
pp i-vi

Cases
pp vii-x

Legislation
pp xi-xiv

1 - Introduction
pp xv-xxii

Part I - New Science and Technology and the Arising Ethical and Legal Issues
pp 1-10

2 - Advancing Genetic Science and New Technologies
pp 11-12

3 - Ethical Issues, Legal Issues and Public Policy Concerns in a New Genomic Era
pp 13-39

4 - A Disability Framework – The Interface of the Social Model of Disability with the Evolution of Genetic Science
pp 40-91

Part II - The Imperative for Regulation and the Choice of Regulatory Theory and Frameworks
pp 92-106

5 - Mode of Regulation and Choice of Regulatory Frameworks in Legal Theory
pp 107-108

6 - Framings from International Human Rights Law
pp 109-141

7 - Evolving Comparative Law Benchmarks
pp 142-169

Part III - The European Perspective
pp 170-204

8 - Human Rights Norms in the Council of Europe and the Regulation of Genetic Information
pp 205-206

9 - The European Union and Protection of Genetic Information
pp 207-223

Part IV - Building the Case for a European Union Regulatory Framework
pp 224-256

10 - National-Level Approaches – A Patchwork of Protections
pp 257-258

11 - Building a Case for European Union Legislative Action
pp 259-270

12 - Conclusion: Where Next for the European Union?
pp 271-293

Index
pp 294-298

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Genetics, Disability and the Law

Towards an EU Legal Framework

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