'Genetic Discrimination - A European Level Response' – March 6, 2012
Welcome

The CENTRE FOR DISABILITY LAW AND POLICY will co-host a one-day seminar in conjunction with the EUROPEAN DISABILITY FORUM and the EUROPEAN PARLIAMENT DISABILITY GROUP entitled ‘Genetic Discrimination – Transatlantic Perspectives on the Case for a European Level Legal Response’.

NOTE:  This event will take place on 6th March 2012 in the EUROPEAN PARLIAMENT, BRUSSELS (exact location to be confirmed) from 2pm until 6pm.

There will be no registration fee to attend this event.

The purpose of this seminar is to 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. 

On 19th November, 2011 the Centre for Disability Law and Policy (in conjunction with the Burton Blatt Institute, Syracuse University, USA) hosted a confernce entitled ‘Genetic Discrimination – Transatlantic Perspectives on the Case for a European Level Legal Response’. 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.  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. 

This event aims to build upon the discussion generated from the conference on 19th November 2011, and further highlight the issue of genetic discrimination and protection of genetic privacy as one which merits attention and regulation at European level.  It is necessary to present this case on a European level and raise awareness of the need to appropriately regulate this area.  The seminar will focus on the legal and policy vacuum, and will propose a case for comprehensive and uniform legislation at European level.  If left inadequately regulated, there is a real possibility that discrimination will become more widespread and that employers, insurance companies (and other interested third parties) will take advantage of individuals and misuse sensitive genetic information.

Outcome of the event:
The event will highlight the issues of genetic discrimination and genetic privacy on a European forum.  It will also raise awareness of the issues to the key European Institutions in Brussels.  This is an important and necessary step towards introducing reform in the area and taking the opportunity to make recommendations for legal intervention.  The outcome of the seminar will further the discussion on what an appropriate European level response might be – involving stakeholders who will be contributing towards drafting, producing and implementing such a legislative response. The potential practical impact of this seminar is that it will make a meaningful contribution towards framing the necessary legal reform in this area.

Who is the event aimed at:
The event is aimed at legal practitioners and medical practitioners, academics and researchers, NGOs and those involved in disability issues, bioethics and practice. It is aimed at Members of the European Parliament, the European Commission and other key European institutions. It is also aimed at those interested in medical testing generally as well as genetic testing specifically.