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.
Professor Noel Lowndes chronicled the evolution of genetic science and technology, highlighting the potential of genetic testing to detect the onset of future disabilities. Genetic testing also offers the possibility of personalised medicine and can offer the possible treatment and even cures for diseases at an early stage. Genetic testing is becoming more accessible and sophisticated and is being increasingly used for both medical and non- medical purposes.
Professor Yann Joly outlined the ethical and legal implications arising from the use of genetic information by third parties, exploring the potential for genetic discrimination. See a previous blog post here. Genetic discrimination can be perpetrated, not only by employers and insurance companies, but also by other interested social actors such as banks and companies offering long- term loans, educational facilities, and immigration officials. These third party interests give rise to a conflict of competing rights and interests, and provoke the question of how best to reconcile and balance these competing interests.
The conference focused on the importance of engaging in a transatlantic dialogue in this area, and learning from experiences in other jurisdictions. Professor Michael Waterstone and Professor Meera Adya outlined the regulation of genetic discrimination in the United States. Their papers also examined the balance struck in the Genetic Discrimination Non Discrimination Act (GINA) 2008, as well as the merits and shortcomings of the US legislation. Although not a perfect piece of legislation, GINA is a strong and essential first step in the fight against misuse of genetic information, in the context of employment and health insurance.
The current position at European level consists of a patchwork of diverse laws throughout the European Member States, as was explained by Professor Henriette Roscam Abbing and Dr Delia Ferri, who also presented the challenges and possibilities of legislating at European Union level. The Council of Europe’s Convention on Human Rights and Biomedicine offers some guidance on regulating genetic testing, as does Article 21.1 of the European Union Charter of Fundamental Rights, which expressly prohibits discrimination based on genetic features. The United Nations Convention on the Rights of Persons with Disabilities has been signed and ratified by Europe, reinforcing the responsibility on the European Institutions to seriously reflect on the case for some form of legislative or other response. The possibility of and legal basis for introducing a new genetic information non- discrimination Directive was explored, as was the possibility of amending existing Directives – the most effective of these options being the introduction of a new Directive to regulated this area.
The afternoon session concluded with a roundtable discussion with Pat Clarke, (European Disability Forum), Marian Harkin, (Member of the European Parliament) and Billy Hawkes, (Irish Data Protection Commissioner), all of whom recognised the importance of highlighting the issue of genetic discrimination at European level as one which merits attention.
The Rapporteur’s Report was delivered by Professor William Binchy, who reflected upon the emerging consensus that rapidly advancing genetic technology is giving rise to new economic opportunities, together with ethical, social and legal considerations. As interest in genetic science and technology is growing, appropriate regulation is necessary. If left unregulated, there is a real possibility that discrimination will become more widespread and that employers, insurance companies (and other interested third parties such as banks, educational facilities, and companies specialised in reproduction) will take advantage of individuals and misuse sensitive genetic information.
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.