by Aisling de Paor
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 regulate this area, as well as the transatlantic perspectives on the matter.
Speakers included Professor Ciaran Morrison (Centre for Chromosome Biology, School of Natural Sciences, NUI Galway), who illustrated the reality of rapidly advancing genetic science, and the potential of new genetic testing technology. Professor Yann Joly (Centre of Genomics and Policy, McGill University, Montreal, Canada) outlined the ethical and legal implications arising from the use of genetic information by third parties, exploring the potential for genetic discrimination. Professor Peter Blanck (Burton Blatt Institute, Syracuse University) examined the position in the United States and the Genetic Information Non Discrimination Act 2008, while setting the scene in a historical, sociological and political context. Dr Delia Ferri (Faculty of Law, University of Verona) presented the challenges and possibilities of legislating at European Union level, looking particularly at the privacy and non- discrimination approaches. A roundtable panel composed of Pat Clarke (member of European Disability Forum Executive Committee/ President, Down Syndrome Ireland), Marian Harkin, MEP, Peter Hustinx (European Data Protection Supervisor) and Dima Yared (Office of the High Commissioner for Human Rights) discussed the different perspectives for the way forward.
The Rapporteur’s Report was delivered by Dr Elise Muir (Maastricht University), who reflected upon the emerging consensus that genetic science is advancing at a rapid pace, and is becoming more accessible and more readily available to individuals and third parties. Dr Muir acknowledged that although advancing genetic research offers the potential to revolutionise health care and medical treatment, it could also result in problems and pitfalls with the misuse of sensitive genetic information. Although a comprehensive European level response is needed in this area, to adequately protect genetic privacy and prevent the discriminatory use of genetic information (and also to avoid a parsimonious approach to the issue), care needs to be taken when considering the nature of the problem and the appropriate way forward.
Professor Gerard Quinn, Director of the Centre for Disability Law and Policy at NUI Galway, stated:
“This is the Centre at its best. We exist to inform debate and have impact. Scientific advances are for the benefit of all and we must maintain public confidence. The best way to do this is to have a European level debate about how to protect people against the abuse of genetic information. Because of this event, a unique partnership between the Centre for Disability Law and Policy and the European Parliament, there is now a genuine European-level debate that should hopefully generate a European-level response in time.”