Centre for Disability Law and Policy,
National University of Ireland, Galway
Ireland.
www.nuigalway.ie/cdlp
&
Burton Blatt Institute, Syracuse University, USA.
www.bbi.syr.edu
‘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 for 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 ratification 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, on request.
Contact aisling.depaor@nuigalway.ie for further details.
PROGRAMME
8.30-9.00
Registration
9.00-9.10
Welcome: Professor Nollaig Mac Congail, Registrar, NUI Galway
Chair: Mr Justice John Mac Menamin, Judge of the High Court of
Ireland
9.10-10.45
Context: Advances in Genetic Science and Technology
9.10-9.40
The Evolution of Genetic Science & Technology
Professor Noel Lowndes (Professor of Biochemistry and Head of
Department, NUI, Galway) (Centre for Chromosome Biology, NUI,
Galway)
9.40-11.00
Challenges: Ethical Dilemmas arising from the Emerging
Technology
9.40-10.10
Ethical Challenges at the Frontiers of Science
Javier Romanach Cabrero (Social activist, Member of Independent
Living and Diversity Forum)
10.10-10.40 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)
10.40-11.00 Q & A
11.00-11.15 Tea/Coffee
11.15-1.00
The US Legislative and Policy Response
11.15-11.50 The Genetic Information Non-Discrimination Act (GINA), USA
Professor Michael Waterstone (Loyola Law School, Los Angeles,
USA)
11.50-12.25 The GINA Act in Context and its Effectiveness so far
Professor Meera Adya (Director of Research, Burton Blatt Institute,
Syracuse University, USA)
12.30-12.45 Q & A
12.45-2.00
Lunch
2.00-4.00
The Case for a European Regulatory
Response
2.00-2.35
Benchmarks: The Council of Europe norms on Genetic
Discrimination
Dr Henriette Roscam Abbing (Professor Emeritus of Health Law,
Amsterdam, The Netherlands)
2.35-3.10
Legislating at the EU Level: Possibilities and Challenges
Avv. Dr. Delia Ferri, (Honorary Research Fellow, Faculty of Law,
University of Verona)
3.10-3.20
Q&A
3.20-4.00
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)
The EU Data Protection Perspective
Billy Hawkes, Irish Data Protection Commissioner (Member of
Article 29 Data Protection Working Party)
4.00-4.15
Q&A
4.15-4.30
Tea/Coffee
4.30-4.45
Rapporteur’s Report
Professor William Binchy, Trinity College Dublin
4.45-5.00
Close of the Conference
About the Centre for Disability Law and Policy
The Centre for Disability Law and Policy (CDLP) was formally established in 2008 and is
dedicated to producing research that informs debate on national and international
disability law reform. The establishment of the CDLP coincides with one of the most
intensive periods of disability law reform in Ireland, as well as internationally. The
adoption of the United Nations Convention on the Rights of Persons with Disabilities in
2006 also contributes towards accelerating this worldwide trend and provide further
direction.
The purpose of the CDLP is to broaden debate about disability law reform in Ireland by
placing it in an international and comparative context and by highlighting international
best practice. The Centre has undertaken a number of major research projects
(including projects on how to best configure national disability strategies and how to
achieve the personalisation of disability supports). It contributes detailed legislative
submissions to Government on emerging and topical disability issues. The CDLP has a
vibrant Ph.D. programme, and hosts public lectures and seminars for interested
stakeholders on a variety of diverse and topical areas throughout the year. The CDLP
runs an LL.M. on International and Comparative Disability Law, which offers students an
innovative and internationally focused programme dealing with the process of law reform
and policy in the field of disability.
Lifecourse Institute
The CDLP is also part of the Lifecourse Institute in NUI, Galway: an alliance between the
CDLP, the Irish Centre for Social Gerontology and the Child and Family Research
Centre. This alliance aims to advance an integrated approach to research into policy
and services for older people, children and families, and people with disabilities.
Conceptually, the Lifecourse Institute marks an innovative approach in the social
sciences by establishing the lifecycle as a key framework of reference for understanding
existing vulnerabilities in society.
Justice John Mac Menamin, High Court of Ireland
Mr. Justice John Mac Menamin was educated in Terenure College and thereafter
University College Dublin where he obtained an Honours degree in History in 1973. As
a student he was a Council member of Free Legal Advice Centres, and was involved in
running a centre in Ballyfermot. He qualified as a barrister in Kings Inns 1975 and was
called to the Bar that year. He was called to the Inner Bar in 1991 and engaged in
general practice, specialising in judicial review work. He appeared and acted for a
number of clients before the Flood/Mahon Tribunal and acted for the Department of
Health and members of the Cabinet including the Taoiseach before the Ryan Tribunal.
Having served on the Bar Council for four terms, he was elected Chairman, serving from
1997 to 1999. He was a director of the VHI from 1995 to 1997. Since his appointment
to the bench in 2004 he has dealt primarily with judicial review matters. He was
appointed a member of the Special Criminal Court in 2009. Since his appointment he
has decided a number of cases with a significant European human rights dimension,
addressing issues as to the rights of asylum seekers, children in need of special care,
treatment of prisoners, and unmarried fathers. He has published a number of papers
and made contributions to seminars, especially with regard to family law and the law of
children. He was in charge of the High Court Minors list for three years. He is Ireland’s
representative on the CCJE, the Consultative Council of European Judges, an advisory
committee to the Council of Ministers of the Council of Europe.
Professor Noel Lowndes
Professor Lowndes, BA (Mod) PhD is Chair of Biochemistry and Director of the Centre for
Chromosome Biology, NUI Galway. Professor Lowndes graduated with a degree in
Genetics from Trinity College Dublin in 1983. His post-graduate studies were completed
at the Beatson Institute for Cancer Research, Glasgow and Columbia University, New
York. He was awarded a PhD in Molecular Pathology by the University of Glasgow in
1987 for his work on the transcriptional regulation of the c-Ha-ras proto-oncogene. His
post-doctoral work on the regulation of cell cycle regulated gene transcription was
conducted in Lee Johnston's laboratory at the National Institute for Medical Research
(NIMR) in London. In 1993 Professor Lowndes established his own laboratory at the
Cancer Research UK (CRUK) Clare Hall laboratories, widely regarded as world-class in
the fields of DNA repair and cell cycle research. In 2001, Professor Lowndes returned to
Ireland to take up the Chair of Biochemistry at NUI Galway. Since that time the
Department of Biochemistry at NUI Galway has significantly developed its research
capacity. In particular, he is the founding director of the Centre for Chromosome Biology
(http://www.chromosome.ie/), where his laboratory focuses on genetic and biochemical
analyses of genome stability pathways.
In 2003, in recognition of his research achievements, Professor Lowndes was elected to
the membership of the European Molecular Biology Organisation, one of just five EMBO
members in Ireland.
Professor Yann Joly, Centre of Genomics and Public Policy
Yann Joly, Ph.D. (DCL), is a Lawyer and an Assistant Professor at the Faculty of
Medicine, Department of Human Genetics at McGill University, Montreal, where he
lectures ‘Genetics, Ethics and the Law’, and ‘Topics on the Human Genome’. He is also
a research fellow from the Fonds de la recherche en santé du Québec (FRSQ) and a
researcher at the Centre de recherche en droit public (Université de Montréal). He also
works as an ethics and legal consultant in the private sector. Prof. Joly is the North
American coordinator of the Association de recherche et de formation en droit medical
(ARFDM) and the Data Access Officer of the International Cancer Genome Consortium
(ICGC). His research activities lie at the interface of the fields of intellectual property,
health law (biotechnology and other emerging health technologies) and bioethics. He
has served as a legal advisor on several ethics committees in the public and private
sectors. Professor Joly is a member of the Advisory Board of the Current
Pharmacogenomics and Personalized Medicine Journal.
Javier Romanach Cabrero
Javier Romañach Cabrero is a social activist, philosopher and writer. He has developed
a new theoretical model on functional diversity (disability), based on dignity and diversity
and rejecting ability as a way to value human beings: "The diversity model". He is an
expert in the area of bioethics and author of the book "Bioethics from the other side of
the looking glass" (in Spanish). He is co-author of the new ethical proposal: "Diversity
ethics", as an alternative to Peter Singer ethics. He is a member of the Independent
Living and Diversity Forum, an Internet based network to promote Independent Living
and promote Human Rights for functionally diverse (disabled) people in Spain.
Professor Michael Waterstone
Michael Waterstone is the Associate Dean for Research and Academic Centers and the
J. Howard Ziemann Fellow and Professor of Law at Loyola Law School. After law
school, Michael Waterstone clerked for the Honorable Richard S. Arnold on the United
States Court of Appeals for the Eighth Circuit, then worked as an associate in the Los
Angeles law firm of Munger, Tolles, & Olson for three years. From 2003-2006,
Waterstone taught at the University of Mississippi Law School. He joined Loyola's
faculty in the fall of 2006. Professor Waterstone is a nationally recognised expert in
disability and civil rights law. He is one of the co-authors of a leading casebook on
disability law and his recent articles are in the Harvard Law Review, Notre Dame Law
Review, Minnesota Law Review, Duke Law Journal, Vanderbilt Law Review, and
Northwestern Law Review, amongst others. He is an associated colleague with the
Harvard Law School Project on Disability, an affiliated researcher with the Burton Blatt
Institute, and has consulted on projects with the National Council on Disability, the World
Bank, and the Vietnam Assistance for the Handicapped.
Professor Meera Adya
Meera Adya, J.D., Ph.D., is the Burton Blatt Institute Director of Research and Affiliated
Faculty in Psychology at Syracuse University and the Consortium for Culture and
Medicine involving SUNY Upstate Medical University, Syracuse University, and Le
Moyne College. Her interdisciplinary research focuses on identifying and remediating
social problems through empirical exploration of the factors that affect decision-making
and testing of efficacious remedies that fit within an existing legal framework. Dr. Adya
earned her law degree and doctorate in social psychology from the University of
Nebraska-Lincoln, which is among the foremost interdisciplinary programs in psychology
and law. Using the literature of disability discrimination in employment, her research laid
the foundation for a new direction in employment and disability discrimination research;
findings demonstrate the potential for discrimination based on perceived disability due to
a positive family history or a positive genetic test for a disorder. Other recent work at the
intersection of law and psychology involved examining U.S. Supreme Court
jurisprudence related to 4th Amendment search and seizure caselaw and conceptions of
privacy. While jurisprudence seems to consider privacy a unidimensional construct, our
empirical research using multidimensional scaling techniques suggests privacy is more
complex than that.
As Director of Research at BBI, Dr. Adya directs the research agenda and oversees all
BBI research activities across all offices. Dr. Adya has extensive experience with funded
research and has developed and implemented multiple research projects and grant
applications. Key projects include: (1) the Disability Case Study Research Consortium
on Employer Best Practices in Employing Persons with Disabilities, a project which has
established a paradigm for conducting case studies of the employment of persons with
disability and which involved conducting several case studies (Project Director); (2) a
field-based experimental study investigating implicit attitudes evident in employer hiring
decisions for the NIDRR-funded Demand-Side Employment Placement Models project
(Principal Investigator); (3) a project examining workplace accommodations'
effectiveness and cost-benefit over the long-term, a sub-contract of the Workplace
Accommodations RERC (Co-Principal Investigator); (4) a project examining workplace
policies and practices that support the reintegration and retention of Veterans, National
Guard and Reserve members; and (5) a project examining service delivery models of
assistive technology to facilitate improved employment outcomes for persons with
disabilities.
Avv. Dr Delia Ferri
Delia Ferri graduated in Law magna cum laude in 2003 at the University of Verona,
Faculty of Law. Her LLB thesis on freedom of art was awarded “Premio Dugoni 2003”.
In 2004 she had the opportunity of being a stagiare with the Italian Representation at the
EU, within the COREPER (Committee of Permanent Representatives of the European
Union) and the Council.
In 2005/2006 she attended UNESCO as a legal observer during the negotiations of the
Convention on the protection and promotion of the diversity of cultural expressions. In
2007, she gained a Doctorate in European and Italian Constitutional Law at the
University of Verona, Faculty of Law. Her doctoral thesis on EU cultural law and policies
was awarded the national prize “Premio Ettore Gallo 2008”. A refined version of her
doctoral thesis has been published at the end of 2008 with the title "La costituzione
culturale dell'Unione europea". In 2006, Delia Ferri also earned a Diploma in EU Legal
Practice at the Central European University of Budapest.
In 2007, she was lecturer of European Union Law at the MA course “Informatore
Europeo per i servizi locali” organized by the University of Trento-Jean Monnet Centre.
From April 2008 to June 2008, she was Visiting Fellow in the Department of Law at
European University Institute (San Domenico di Fiesole-Florence). Currently, Delia Ferri
is Cultore della materia in European and Comparative Law at the University of Verona,
Faculty of Law and Cultore della materia in Public Law at the University of Verona
Faculty of Languages and Foreign Literature. She has written extensively on the areas
of European Law, Disability Law, and in particular the United Nations Convention on the
Rights of Persons with Disabilities.
Delia Ferri is a registered Attorney at Law (Verona Bar). In 2009/2010 she was EU law
Consultant for the European Foundation Center (Brussels). She works as counsel for a
law firm in Verona. In 2010 she collaborated on the study "The Implementation of the
UNESCO Convention on Cultural Diversity” (IP/B/CULT/IC/2009-057) for the European
Parliament. She has extensive experience as legal adviser providing consultancy for
relevant applied research projects in Italy and abroad. From April 2009 she has also
been a member of the Human Rights Committee of the Verona Bar Council
(Commissione Diritti Umani dell’Ordine degli Avvocati di Verona ).
Professor Henriette Roscam Abbing
Professor Dr. Henriette Roscam Abbing is one of the pioneers of Dutch and European
Health Law. She has worked for the Council of Europe (Public Health Department) and
combined her professoriates (Universities of Maastricht and Utrecht) with a position as a
legal counsel (health law) to the Minister of Health. She has been a member of the
editorial board of the Dutch Journal for Medicine and served over 25 years as one of the
editors of the Dutch Journal on Health Law. She is the co-founder of the European
Journal of Health Law, of which she is a co-editor. She is the vice-president of the
European Association of Health Law, which she initiated.
Her scientific activities and publications cover the whole range of health law, with special
focus on developments in biotechnology and their impact on the rights of the patient.
Among her many activities she has been a co-author of the WHO- Declaration on the
Rights of the Patient, a member of the drafting group of the Council of Europe
Convention on Human Rights and Biomedicine, initiator of the Council’s work on the use
of human biological materials in biomedical research and a member of the expert group
on the ethical, legal and social implications of genetic testing (EC). She was the chair of
a Committee of the Dutch Health Council on Heredity, Science and society (genetic
testing and genetic therapy). As Emeritus Professor, she has a consultancy practice in
health law, with special focus on asylum seekers and irregular migrants.
J Patrick Clarke, European Disability Forum
Patrick Clarke is Chief Executive of Down Syndrome Ireland and President of Down
Syndrome International. His son now aged 30 has Down syndrome. Pat serves on the
board of the Children’s Rights Alliance and on the governing body of the International
Disability Alliance. At a European level he is a member of the Executive Board of the
European Disability Forum where he chairs the Youth Committee and the Committee on
Stereotypes and Access to Health. He also serves on the advisory board of the
European Coalition on Community Living.
Marian Harkin, MEP
Marian Harkin is an Independent MEP for the North and West Constituency of Ireland.
Marian was elected as an Independent Member of the Irish Parliament and has been
elected twice as a Member of the European Parliament.
As a Member of the Alliance of Liberals and Democrats for Europe (ALDE) in the
European Parliament, Marian is a full member and ALDE co-ordinator of the
Employment and Social Affairs Committee, substitute member on the Agriculture and
Rural Development Committee and substitute member on the Petitions Committee.
Marian is also President and founding member of the European Parliament Volunteering
Interest Group and she successfully led the campaign in the Parliament to have 2011
designated as the European Year on Volunteering. Throughout this campaign Marian
worked constantly with “The Alliance” – a network of NGOs and Voluntary
Organisations, National and Transnational. She always insisted that the Voluntary
Sector would play a central role during the year and her objective is that there will be
added value at European level. Marian is also co-President and founding member of the
European Parliament Carers Interest Group. She works closely with Credit Unions (not
for profit financial institutions) both in Ireland and globally and works to represent their
interests at European and National Level.
More recently Marian has been appointed as co-chair of the Politicians for Cervical
Cancer Prevention and is also co-chair of the Mental Health Interest Group and Member
of the Disability Intergroup in the European Parliament.
Billy Hawkes, Data Protection Commissioner
Billy Hawkes has been the Irish Data Protection Commissioner since 2005. Prior to his
appointment, he worked as a civil servant in various government departments, including
Finance, Enterprise, Trade & Employment and Foreign Affairs. In June 2010, he was
reappointed to the post for a further 5 years.
Professor William Binchy
William Binchy BA BCL LLM (NUI) MA (DUBL) FTCD (1995), Barrister-at-Law. William
Binchy is Regius Professor of Laws. He was formerly a special legal adviser on family
law reform to the Irish Department of Justice and Research Counsellor to the Law
Reform Commission. He is a member of the Irish Human Rights Commission. He was
Visiting Fellow at Corpus Christi College, Cambridge (Michaelmas Term 2002). He has
authored and co-authored books on private international law, torts and family law and
organises the Annual Workshop on Constitutionalism for African Chief Justices and
Senior Judiciary, held at the Law School, now in its tenth year. He has represented
Ireland at the Hague Conference on Private International Law on the themes of marriage
and inter-country adoption. He was a member of the Committee on the Offences
Against the State Acts, Chaired by the Hon. Mr. Justice Anthony Hederman. He has
acted as consultant to the Irish Department of Foreign Affairs in relation to the TimorLeste judicial system, making a field visit in August 2005. He has organised visits of the
members of the Tanzanian Judiciary to Trinity College Dublin in March 2005 and of
members of the Irish Judiciary to the University of Dar-es-Salaam in June 2006.