Marian Harkin, MEP, and Phil Prendergast, MEP recently hosted a seminar on Genetic Discrimination in the European Parliament in Brussels. The event was led by the Centre for Disability Law and Policy at NUI Galway, in conjunction with the European Disability Forum.

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.

International speakers at the seminar included: Professor Ciaran Morrison, Centre for Chromosome Biology, School of Natural Sciences, NUI Galway; Professor Yann Joly, Centre of Genomics and Policy, McGill University, Montreal, Canada; Professor Peter Blanck, Burton Blatt Institute, Syracuse University; and Dr Delia Ferri, Faculty of Law, University of Verona.

Professor Gerard Quinn, Director of the Centre for Disability Law and Policy at NUI Galway, said: “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.”

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 can 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, care needs to be taken when considering the nature of the problem and the appropriate way forward.

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