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Vol 21 No 10 Oct/Nov 2016

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Genetic Discrimination: Transatlantic Perspectives on the Case for a European Level Legal Response

Edited by: Gerard Quinn, Aisling de Paor, Peter Blanck

ISBN13: 9780415836937
Published: November 2014
Publisher: Routledge
Country of Publication: UK
Format: Hardback
Price: £95.00



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The science and technology of genetic testing is rapidly advancing with the consequences that genetic testing may well offer the prospect of being able to detect the onset of future disabilities. Some recent research also indicates that certain behavioural profiles may have a strong genetic basis, such as the determination to succeed and win or the propensity for risk-taking, which may be of interest to third parties. However, as this technology becomes more prevalent there is a danger that the genetic information may be misused by entities such as employers, insurance companies, educational facilities, and finance companies and that people with particular genetic profiles may be discriminated against.

This book explores the different types and the potential uses of genetic testing. The book highlights the ethical and legal dilemmas and the challenges arising as a result of emerging and rapidly advancing genetic science. Chapters in the book assess the importance and impact of the US Genetic Information Non-Discrimination Act (GINA) in the employment and health insurance contexts asking whether it is proving to be an effective tool in addressing the issue of genetic discrimination and alleviating individuals' fears of discrimination. The book then goes on to make the case for regulation at the European Union level in order to protect the privacy of genetic information and to prevent the discriminatory use of genetic information in Europe. It considers what can be learnt from the experience of the US in addressing ethical and legal issues as well as the impact that the UN Convention on the Rights of Persons with Disabilities is having on this debate within the EU.

Subjects:
Human Rights and Civil Liberties, Discrimination Law
Contents:
Part 1: Advances in Genetic Science and Technology
1. The History and Evolution of Genetic Science & Technology, Noel Lowndes
2. The Future of Genetic Science - Advancing Genetic Technology, Ciaran Morrison

Part 2: Ethical Dilemmas arising from the Emerging Technology
3. Ethical Challenges at the Frontiers of Science, Anita Silvers
4. Diversity Ethics and the Impact of Genetic Technologies, Javier Romanach Cabrero
5. Legal and ethical issues arising from third party use of genetic information, Yann Joly

Part 3: The United States Legislative Response
6. The historical background to GINA - the 13- year journey through Congress, Peter Blanck
7. The Genetic Information Non Discrimination Act (GINA) 2008, Michael Waterstone and Anya Prince
8. The GINA Act in Context and its Effectiveness so far, Meera Adya

Part 4: The Case for a European Regulatory Response
9. The Council of Europe norms on Genetic Discrimination, Henriette Roscam Abbing
10. Regional perspectives - national responses in Europe, Ine Van Hoyweghen
11. The European Union Data Protection position, Mark Taylor
12. The United Nations Convention on the Rights of Persons with Disabilities - an introduction, Rosemary Kayess
13. The insurance industry - opposition to regulation at EU level, James Davey
14. The Employment Industry, Antoinette Rouvroy
15. European Human Rights institutions, Gerard Quinn

Part 5: The Way Forward
16. Legislating at the EU Level: Possibilities and Challenges, Delia Ferri
17. Conclusions, Gerard Quinn, Professor Peter Blanck and Aisling de Paor