Launch of Groundbreaking Book on Genetic Discrimination

At the book launch at the European Commission Representation were authors and contributors: Professor Gerard Quinn , Centre for Disability Law and Policy, NUI Galway; Dr Delia Ferri, School of Law, NUI Maynooth; Professor Emeritas Henriette Roscam Abbing, Dr Aisling de Paor, School of Law and Government, DCU; Marian Harkin MEP; and Professor Noel Lowndes, Biochemistry, NUI Galway.
Dec 19 2014 Posted: 14:54 GMT

MEP Marian Harkin and members of the judiciary, as well as leading figures from the areas of disability and genetics joined on Friday night, 12th December, at the European Commission Representation to celebrate the launch of Genetic Discrimination – Transatlantic perspectives on the case for a European-level legal response.

The book is edited by Professor Gerard Quinn, (Centre for Disability Law and Policy, School of Law, NUI Galway), Dr Aisling de Paor (School of Law and Government, DCU) and Peter Blanck (Burton Blatt Institute, Syracuse University, USA) and focuses particularly on the legislative and policy framework in the European Union emphasising gaps in protection and the scope for specific legislative action in the area of genetic discrimination.

Professor Quinn said “One reason we are proud of this book is that it brings several disciplines together including the hard sciences, public policy, ethics and law in a common discussion about how to enable genetic and other scientific research to evolve and grow, how to enhance public confidence in the research and how to tame it so that it underpins and not undermines our values.”

He continued “This book is written within a context that promises an explosion of scientific insights into what it means to be human and indeed how we might go beyond being human. It is a context that taxes our existing frames of reference to accommodate such changes whether they lie in ethics, public policy or law.”

As genetic technologies advance, genetic testing may well offer the prospect of detecting the onset of future disabilities. Some research also posits that certain behavioural profiles may have a strong genetic basis, such as the determination to succeed, or the propensity for risk-taking. As this technology becomes more prevalent, there is a danger that genetic information may be misused by third parties and that particular genetic profiles may be discriminated against by employers, by providers of social goods and services, such as insurance companies and even by educational facilities.

This book explores the different forms and potential uses of genetic testing. Drawing together leading experts in disability law, bioethics, health law and a range of related fields, it highlights the ethical and legal challenges arising as a result of emerging and rapidly advancing genetic science. On examining transatlantic perspectives on the matter, chapters in the book ask whether the US Genetic Information Nondiscrimination Act (GINA) is proving to be an effective tool in addressing the issue of genetic discrimination and alleviating fears of discrimination. The book also reviews what insights may be gained from GINA within employment and health insurance contexts, and asks how the UN Convention on the Rights of Persons with Disabilities (CRPD) may impact similar debates within the European Union.

This book will be of great interest to scholars and students of discrimination law, bioethics and disability law, and will be of considerable use to legal practitioners, medical practitioners and policy-makers in this area.


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