'Genetic Discrimination-An EU Level Response', November 19, 2011
Conference Programme

Centre for Disability Law and Policy,
National University of Ireland, Galway


Burton Blatt Institute, Syracuse University, USA

‘Genetic Discrimination – Transatlantic Perspectives on the Case for a European Level Legal Response’

Date: 19th November 2011

Venue: National University of Ireland (Galway)

Purpose of 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. If sufficient protections are not in place to prohibit the misuse or discriminatory use of that information by third parties (employers, insurance companies, educational facilities, etc) then such a legislative and policy vacuum could further setback the inclusion of persons with disabilities (and older persons) into the community. To date, there is no European level regulation protecting the privacy of such information or protecting against the discriminatory use of such information.

This conference recounts recent scientific advances that make genetic testing more and more accurate and more sophisticated. 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.

Urgency has been added to the debate by the adoption of the United Nations Convention on the Rights of Persons with Disabilities which prohibits discrimination in a range of fields including employment (Article 25 (e)). The US has signed the convention with a view to ratification by the US Senate. The EU ratifed in December 2010. There is now a responsibility on the European Institutions to seriously reflect on the case for some form of legislative or other response. Even before the EU ratificaton of the Convention, Article 21.1 of the EU Charter of Fundamental Rights expressly prohibits discrimination based on genetic features.

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. CPD points of 5 hours will be awarded to attendees and a Certificate of Attendance will be provided after the Conference.

The working language for the Conference will be English. Irish Sign Language interpretation will be provided (if requested).



8.30-9am         Registration

9.00-9.10         Welcome: Professor Nollaig Mac Congail, Registrar, NUI Galway

Chair:               Mr Justice John McMenamin, Judge of the High Court of Ireland

Context: Advances in Genetic Science and Technology

9.10-10.45        The Evolution of Genetic Science & Technology
Professor Noel Lowndes (Professor of Biochemistry and Head of Department, NUI Galway, Centre for Chromosome Biology, NUI, Galway)

Challenges: Ethical Dilemmas arising from the Emerging Technology

Thinking about the Human Genome and Ethics.
Professor Yann Joly (Centre of Genomics and Policy, McGill University, Canada)

Ethical Challenges at the frontiers of science
Dr Javier Romanach Cabrero (Social activist, Member of Independent Living and Diversity Forum)

10.45-11.00      Q & A
11.00-11.15      Coffee

11.15-1.00        The US Legislative and Policy ResponseThe Genetic Information Non-Discrimination Act (GINA), USA

Professor Michael Waterstone (Loyola Law School, Los Angeles USA).

The GINA Act in Context and its Effectiveness so far.

Professor Meera Adya (Director of Research, Burton Blatt Institute, Syracuse University, USA)

12.45-1.00       Q & A
1.00-2.00         Lunch

2.00-4.00         A European Regulatory Response? 

Benchmarks: The Council of Europe norms on Genetic Discrimination.
Dr Henriette Roscam Abbing (Professor Emeritus of Health Law, Amsterdam, The Netherlands)

Legislating at the EU Level: Possibilities and Challenges
Avv. Dr. Delia Ferri, (Honorary Research Fellow, Faculty of Law, University of Verona)

Roundtable on the Way Forward

European Disability Forum
J Patrick Clarke (member of European Disability Forum Executive Committee/President, Down Syndrome Ireland)

European Parliament – Disability Intergroup
Marian Harkin, (Member of the European Parliament)

EU Advisory Body on Data Protection and Privacy
Billy Hawkes, Irish Data Protection Commissioner (Member of Article 29 Data Protection Working Party)

4.00-4.15         Q & A
4.15-4.30         Coffee

4.30-4.45.        Rapporteur’s Report

Professor William Binchy, School of Law 

Trinity College Dublin

4.45-5.00         Close of the Conference