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

The Centre for Disability Law and Policy,  National University of Ireland, Galway and Burton Blatt Institute, Syracuse University, USA hosted the conference on 'Genetic Discrimination - Transatlantic Perspectives on the Case for a European Level Legal Response' on the 19th November 2011.

The purpose of this conference was 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. Many thanks to the speakers and all attendees for an excellent conference. 

The Conference was chaired by Mr Justice John McMenamin, of the High Court of Ireland. The Conference Rapporteur was Professor William Binchy, Trinity College Dublin.

Programme

The programme of the conference is available here.

There will also be a roundtable discussion composed of J Patrick Clarke (member of European Disability Forum Executive Committee/ President, Down Syndrome Ireland), Marian Harkin (Member of the European Parliament) and Billy Hawkes, Irish Data Protection Commissioner (Member of Article 29 Data Protection Working Party) discussing the way forward.

Conference Materials

Presentations & Papers

Please find the speaker's presentations that were made at the conference below:

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

Ethical Challenges at the Frontiers of Science
Javier Romanach Cabrero (Social activist, Member of Independent Living and Diversity Forum)

Ethical and Legal Implications arising from the use of Genetic Information by Third Parties
Professor Yann Joly (Centre of Genomics and Policy, McGill University, Montreal, Canada)

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)

The EU Data Protection Perspective

Billy Hawkes, Irish Data Protection Commissioner (Member of Article 29 Data Protection Working Party) 

Conference Videos

Click the playlist button for more videos