Book Launch 12th December 2014: Genetic Discrimination – Transatlantic Perspectives on the Case for a European Level Legal Response

9780415836937A new book entitled ‘Genetic Discrimination – Transatlantic Perspectives on the Case for a European Level Legal Response’ published by Routlegde will be launched on the 12th of December 2014.  The book edited by Prof Gerard Quinn (NUI Galway), Dr Aisling de Paor (Dublin City University) and Prof Peter Blanck (Syracuse University) will be launched by Marian Harkin MEP at the European Commission Representation Office, Dawson Street, Dublin.

The book is timely as genetic technologies advance, genetic testing may well offer the prospect of detecting the onset of future disabilities. Some research also forwards 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 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 edited 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. The book focuses particularly on the legislative and policy framework in the European Union, with an emphasis on the gaps in protection and the scope for specific legislative action in this area.

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.

The launch will take place on the 12th December 2014 at 5pm at the European Commission Representation Office, Dawson Street, Dublin.  If you are interested in attending please RSVP mary.faherty@nuigalway or telephone 091 – 495888.

You can order a copy of the book here.

Book Launch 12th December 2014: Genetic Discrimination – Transatlantic Perspectives on the Case for a European Level Legal Response

European Parliament Recently Hosted International Seminar on Genetic Discrimination

We are delighted to welcome this guest post from Aisling de Paor, a Ph.D candidate in the Centre for Disability Law and Policy at NUI Galway, and Irish Research Council for the Humanities and Social Sciences (IRCHSS) scholar. Aisling is a graduate of NUI Galway (BCL) and University College Cork (LL.M).  Aisling qualified as a solicitor and specialized primarily in employment law.

On 6th March 2012, Marian Harkin MEP and Phil Prendergast MEP hosted a seminar on the topic of Genetic Discrimination. The event was organised by the Centre for Disability Law and Policy, NUI Galway, in conjunction with the European Disability Forum, and took place in the European Parliament, Brussels. This international seminar, which was chaired by Andre Gubbels (Belgian Ministry), was the first of its kind in the European Parliament and brought together a diverse range of leading experts in the area, with the objective of exploring the case for a European level response to protect the privacy of genetic information and to prevent genetic discrimination. The seminar highlighted the interdisciplinary nature of this area and focused on the interaction between genetic science, technology, ethics and the law, and in particular, how best to address this complex area. The event also looked at the challenges and practical problems that arise when attempting to Continue reading “European Parliament Recently Hosted International Seminar on Genetic Discrimination”

European Parliament Recently Hosted International Seminar on Genetic Discrimination

Genetic Discrimination Seminar in the European Parliament

The Centre for Disability Law and Policy, Galway will co- host a seminar with Marian Harkin MEP and Phil Prendergast MEP, and in conjunction with the European Disability Forum, on the topic of ‘Genetic Discrimination – Transatlantic Perspectives on the Case for a European Level Legal Response’.  The seminar is taking place from 2- 6pm on 6th March 2012 in the European Parliament in Brussels.  There will be no registration fee to attend – and some places are still available.

The purpose of this event is to bring together key stakeholders in the area to examine and further highlight the case for a European level legal and policy response to protect the privacy of genetic information and to prevent genetic discrimination, particularly in the employment and insurance contexts. Speakers include: Professor Yann Joly (Centre of Genomics and Policy, McGill University, Montreal, Canada), Professor Peter Blanck (Burton Blatt Institute, Syracuse University, USA), Avv. Dr Delia Ferri (Faculty of Law, University of Verona), Peter Hustinx (European Data Protection Supervisor), Dima Yared (Office of the High Commissioner of Human Rights), Professor Ciaran Morrison (Centre for Chromosome Biology, School of Natural Sciences, NUI, Galway), J Patrick Clarke (member of European Disability Forum Executive Committee/President, Down Syndrome Ireland) and Marian Harkin (Member of the European Parliament).

The Centre for Disability Law and Policy hosted a conference on 19th November 2011 entitled ‘Genetic Discrimination – Transatlantic Perspectives on the Case for a European Level Legal Response’.  The conference highlighted the interdisciplinary nature of this area and focused on the interaction between genetic science, technology, ethics and the law, and in particular, how best to regulate this complex area.  On foot of the scientific and legal expertise offered, and on consideration of the potential for abuse and the fundamental human rights at stake, the conference strongly indicated a need for an appropriate regulatory response at European level to protect the privacy of genetic information and to prevent genetic discrimination.  The event in March 2012 aims to build upon the discussion generated from the conference last November and further highlight this issue at European level as one which merits attention.

To register for this event, please go to: http://conference.ie/Conferences/index.asp?Conference=161

Please contact aisling.depaor@nuigalway.ie for further details.

Genetic Discrimination Seminar in the European Parliament

Potential Genetic Discrimination in the English Premier League

We are delighted to welcome this guest post from Aisling de Paor, a Ph.D candidate in the Centre for Disability Law and Policy at NUI Galway, and Irish Research Council for the Humanities and Social Sciences (IRCHSS) scholar. Aisling is a graduate of NUI Galway (BCL) and University College Cork (LL.M).  Aisling qualified as a solicitor and specialized primarily in employment law.

It has recently been reported in the media that an unnamed English Premier League soccer club has been genetically testing its players to determine who is at a higher risk of injury, and to determine which players are likely to perform better.  Genetic technology is rapidly advancing and scientists have discovered over one hundred genetic mutations linked to serious soccer related injuries such as ruptured tendons.  These discoveries are also linked to genes indicating improved performance, such as better aerobic respiration giving players more stamina on the pitch.

The benefits to soccer clubs of engaging in these genetic tests are significant.  Genetic testing could enable clubs to filter out potentially injury prone players before investing large amounts of capital into their development. Competition between soccer clubs is becoming increasingly apparent.  Already, there have been advances in fatigue reduction and hydration management that have enabled some players to perform at greater capacities for longer periods of time.  In addition, there is a strong argument on the part of soccer clubs that genetic testing would enable them to prevent players from incurring potentially career threatening injuries.  Arguably, genetic testing and knowledge of a player’s genetic information may also lead to better Continue reading “Potential Genetic Discrimination in the English Premier League”

Potential Genetic Discrimination in the English Premier League

Report on the Proceedings from the Conference on Genetic Discrimination: Transatlantic Perspectives on the Case for a European Level Legal Response

We are delighted to welcome this guest post from Aisling de Paor, a Ph.D candidate in the Centre for Disability Law and Policy at NUI Galway, and Irish Research Council for the Humanities and Social Sciences (IRCHSS) scholar. Aisling is a graduate of NUI Galway (BCL) and University College Cork (LL.M).  Aisling qualified as a solicitor and specialized primarily in employment law.

On Saturday 19th November 2011, the Centre for Disability Law and Policy (in conjunction with the Burton Blatt Institute, Syracuse University, USA) hosted a conference entitled ‘Genetic Discrimination – Transatlantic Perspectives on the Case for a European Level Legal Response’ at National University of Ireland Galway.  This international conference, which was chaired by Justice John Mac Menamin of the High Court, was the first of its kind in Europe and brought together a diverse range of leading experts in the area, with the objective of exploring the case for a European level response to protect the privacy of genetic information and to prevent genetic discrimination. The conference highlighted the interdisciplinary nature of this area and focused on the interaction between genetic science, technology, ethics and the law, and in particular, how best to regulate this complex area. Continue reading “Report on the Proceedings from the Conference on Genetic Discrimination: Transatlantic Perspectives on the Case for a European Level Legal Response”

Report on the Proceedings from the Conference on Genetic Discrimination: Transatlantic Perspectives on the Case for a European Level Legal Response

Conference on Disability & Genetic Discrimination

This Saturday 19 November the Centre for Disability Law & Policy will co-host a one-day conference with the Burton Blatt Institute entitled “Genetic Discrimination: Transatlantic Perspectives on the Case for a European Level Legal Response”.  It will take place  in Aras Moyola (Ground Floor), North Campus, National University of Ireland Galway commencing at 9am.  The leading experts in the field will speak at the conference.  See the detailed conference programme here and an Irish Times piece here.  This one day international conference is the first of its kind in Europe and will be significant in sparking a debate in Europe about future law and policy in this area.  It is planned to publish the proceedings from the conference. The purpose of this conference is to examine the case for a European level legal and policy response to protect the privacy of genetic information and to prevent genetic discrimination, particularly in the employment and insurance contexts.  The science of genetic testing and related technology is in the process of advancing. Among other things, genetic testing technology may well offer the prospect of being able to detect the onset of future disabilities. The technology is becoming more prevalent and is being used increasingly in both the employment context and the insurance context.  The conference is aimed at legal practitioners and medical practitioners, academics and researchers, NGOs and those involved in disability issues, bioethics and practice. It is also aimed at those interested in medical testing generally as well as genetic testing specifically. There will be Continuing Professional Development (CPD) points available to those who are eligible and a Certificate of Attendance will be provided after the Conference.  For further information please contact Ms. Aisling de Paor at: aisling.depaor@nuigalway.ie or telephone +353 91 494017.

Conference on Disability & Genetic Discrimination

Conference Announcement Genetic Discrimination

The Centre for Disability Law and Policy, NUI, Galway will host a one day conference (in conjunction with the Burton Blatt Institute, Syracuse University) entitled ‘Genetic Discrimination – Transatlantic Perspectives on the Case for a European Level Legal Response’.  The conference is taking place here in NUI, Galway on Saturday, 19th November, 2011.  The purpose of this conference is to examine the case for a European level legal and policy response to protect the privacy of genetic information and to prevent genetic discrimination, particularly in the employment and insurance contexts.  This conference recounts recent scientific advances that make genetic testing more and more accurate and more sophisticated (and which offers the prospect of being able to detect the onset of future disabilities).  It looks at the ethical debate on how to balance competing rights and interests (the right to privacy of the individual and the ‘need to know’ of business and other interests).  It examines the balance struck in the Genetic Information Non-Discrimination Act (2008) in the US.   Keeping in mind the technological advances (and its future orientation) the ethical context and the balance struck in the US legislation it will examine the options for a European legal response possibly in the shape of a new non-discrimination (genetic information) Directive (or an amendment to existing Directives) and whether a sufficient case exists of such a response.  The conference is aimed at legal practitioners, medical practitioners, academics and researchers, NGOs and those involved in disability issues, bioethics and practice. It is also aimed at those interested in medical testing generally as well as genetic testing specifically and the implications of these practices (particularly in the employment and insurance contexts).

See here to register and for more information.

Conference Announcement Genetic Discrimination

Genetic Discrimination by Employers and Insurance Companies- a Battlefield of Fundamental Human Rights?

We are delighted to welcome this guest post from Aisling de Paor, a Ph.D candidate in the Centre for Disability Law and Policy at NUI Galway, and Irish Research Council for the Humanities and Social Sciences (IRCHSS) scholar. Aisling is a graduate of NUI Galway (BCL) and University College Cork (LL.M).  Aisling qualified as a solicitor and specialized primarily in employment law.

The completion of the Human Genome Project (a 13 year effort to sequence the human genome and develop a greater understanding of the genetic make-up of the human species) has opened up a new era in genetic exploration, and technological advances have enabled geneticists to begin to chart the genetic basis of a wide range of common diseases. The result of this rapid pace of gene discovery and genetic medicine envisages a future in which information about a vast amount of disease genes can be readily obtained.  In light of these genetic advances, questions arise as to whether an appropriate framework exists so as to protect the interests of individuals and also to encourage further advances in the medical and scientific fields. With these genetic advances come new Continue reading “Genetic Discrimination by Employers and Insurance Companies- a Battlefield of Fundamental Human Rights?”

Genetic Discrimination by Employers and Insurance Companies- a Battlefield of Fundamental Human Rights?