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Genetics, Disability and the Law

Genetics, Disability and the Law
Towards an EU Legal Framework

$35.99 (C)

Part of Cambridge Disability Law and Policy Series

  • Date Published: December 2018
  • availability: Available
  • format: Paperback
  • isbn: 9781107566804

$ 35.99 (C)
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About the Authors
  • 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
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    Product details

    • Date Published: December 2018
    • format: Paperback
    • isbn: 9781107566804
    • length: 333 pages
    • dimensions: 230 x 153 x 20 mm
    • weight: 0.45kg
    • availability: Available
  • Table 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?

  • Author

    Aisling de Paor, Dublin City University
    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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