pacita project - policy hearing on public health genomics
TRANSCRIPT
http://www.pacitaproject.eu/
PACITA Project - Policy Hearing on Public Health Genomics
Assembleia da República, 18th January 2014, Lisbon,
Organised by ITQB (Mara Almeida and Suéli Neves)
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Index
PACITA Project 3
Policy Hearing – Future Panel on Public Health Genomics 7
Policy Hearing Programme 9
Members of the Future Panel and Panel of Experts 11
List of Participants 18
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PACITA Project
Parliaments and Civil Society in Technology Assessment (PACITA) is a four-year EU
financed project under FP7 Mutual Learning and Joint Action. It is aimed at increasing the
capacity and enhancing the institutional foundation for knowledge-based policy-making on
issues involving science, technology and innovation.
PACITA has 14 European partners from national/regional parliamentary offices for science
and technology, science academies, research institutions, universities and civil society
organizations coordinated by a Parliamentary Technology Assessment (TA) institution, the
Danish Board of Technology Foundation. The Portuguese partner is represented by
Instituto de Tecnologia Química e Biológica (ITQB).
PACITA will be developing activities mainly based upon the diversity of practices in
Parliamentary Technology Assessment (PTA). Such practices involve a range of methods
of cross-disciplinary expert studies, stakeholder involvement, citizen consultation and
parliamentary discourse.
PACITA has 4 main objectives which the action plan aims at:
-Enhancing and expanding the European capacity on evidence-based policy-making and
policy-making based on using science and research
-Promoting public engagement in science
-Improving two-way communication between scientists and other stakeholders
-Ensuring due consideration of ethics in science
The activities of the PACITA project can be followed in Facebook and twitter:
http://www.facebook.com/pacitaproject
https://twitter.com/PACITAproject
The project has also developed a dedicated magazine (volTA).
http://volta.pacitaproject.eu/
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Policy Hearing – Future Panel on Public Health Genomics
The meeting will take place in Portuguese Parliament, Assembleia da República.
Palácio de São Bento was the first Benedictine monastery to be built in Lisbon in 1598.
In 1570 the Order of Saint Benedict decided to build new monasteries in the two main
Portuguese cities; Lisbon and Porto. Until then the Benedictine monks lived mainly on the
North of Portugal. In 1572 the monastery of Nossa Senhora da Estrela was built in Lisbon but it
was too small and too far away from the city centre. The Order of Saint Benedict bought other
properties to start the construction of a new monastery in Lisbon. The works started in 1598
based on the project by the architect Baltazar Alves. After the construction was finished the
monks, or Black Monks named after the Benedictines clothes, moved from Nossa Senhora da
Estrela monastery to the new building known as São Bento monastery. The new building could
provide shelter to fifth monks. Its structure was complex and composed by a church and side
chapels, two towers, dorms, barber, kitchen, dining hall, library, wine cellar, oil mill, stove and
workshops.
The 1755 Lisbon earthquake severely destroyed São Bento monastery. Throughout history the
building changed according to new architectural and decorative styles.
São Bento Monastery was then considered one of the most monumental buildings in Lisbon
even though the works had never really finished. It used to hold official ceremonies with
members of the Royal Family or aristocracy. Later on it was used to gather Torre do Tombo
archives and the Military Academy.
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Its decay started after the extinction of the religious orders, Liberal Wars and French Invasions.
To preserve the building it became a Portuguese state property.
Finally in 1833 the king D. Pedro IV decided to install the chambers of Deputies and the
Chamber of Pares in the São Bento monastery. After that it was known as Palácio das Cortes.
Some of its furniture was sent to museums and churches in order to be conserved.
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Policy Hearing – Future Panel on Public Health Genomics
Policy Hearing
As part of the PACITA project,1 a European Future Panel on Public Health Genomics was
composed to support policy-making on public health genomics, through mutual learning
between experts, parliamentarians and policy-makers. The project aimed to identify key
policy issues and options concerning the future of public health genomics. These will be
discussed during an international Policy Hearing in the Portuguese Parliament (18 Jan
2014).
The Policy Hearing provides an excellent opportunity for experts and policy-makers from all
over Europe to discuss key policy issues and options for the future of public health
genomics.
By stimulating an open dialogue between parliamentarians/policy-makers and
experts/stakeholders, the project also aims to support the development of a collaborative
framework between these actors. The hearing is accessible to the general public, who are
invited to actively take part in the closing plenary debate.
Background
The project “Future Panel on Public Health Genomics” started with a list of issues that were
identified by the “Future Panel”, consisting of several European/national/regional Members
of parliament. Subsequently, four international working groups of leading experts mapped
the state of the art, issues concerning quality assessment, socio-economic issues, and the
most pressing social, ethical and legal issues in public health genomics. Key policy issues
and options were identified in a Policy Options Workshop (Vilnius, 18 Oct 2013), and
through consultation of several policy-experts. During the Policy Hearing the Future Panel
will have the opportunity to discuss potential implications of these examinations for policies
on public health genomics.
1 PACITA (Parliaments and Civil Society in Technology Assessment) is a four-year EU financed Action Plan (FP7), aimed at supporting knowledge-based policy-making on issues involving science, technology and innovation. It is based on diverse practices in Parliamentary Technology Assessment (PTA) in Europe.
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Members of the Expert Working Groups, Steering Group & Task Team
EWG Experts Steering Group Task Team
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Johan T. den Dunnen (The Netherlands) Xavier Estivill (Barcelona) Milan Macek (Czech Republic) Irmgard Nippert (Germany)
Joris Vermeesch (Belgium)
Mara Almeida (Portugal)
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Iñaki Gutiérrez-Ibarluzea (Spain) Cecile Janssens (USA) Inge Liebaers (Belgium) Borut Peterlin (Slovenia)
Angela Brand (The Netherlands) / Alexander Haslberger (Austria)
André Krom Dirk Stemerding (The Netherlands)
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Catherine Bourgain (France) Eugenijus Gefenas (Lithuania) Alastair Kent (UK) Fred Paccaud (Switzerland)
Marc van den Bulcke (Belgium)
Edgaras Leichteris (Lithuania)
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Anders Nordgren (Sweden) Helen Wallace (UK) Martina Cornel (The Netherlands) Pascal Borry (Belgium) Regine Kollek (Germany)
Anne Cambon-Thomsen (France)
Leo Hennen Arnold Sauter (Germany)
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Policy Hearing - Programme
Date: 18th January 2014
Time: 9:30 – 17:30 (GMT)
Opening 9:30 Welcome
Maria Antónia de Almeida Santos President of the Parliamentary Committee of Health, Portugal
9.40 Brief introduction to the meeting
Mara Almeida, ITQB, Portugal 9:45 Introduction: the European Future Panel on Public Health Genomics/
PACITA project Dirk Stemerding, Rathenau Institute, The Netherlands
Session 1 Developments in Medical Genomics Research 10:00 Presentations by Panel of experts: Inãki Gutierrez Ibarluzea Basque Office for HTA, Spain Alastair Kent Genetic Alliance, UK Cecille Janssens (via skype) Emory University, USA
João Lavinha National Institute of Health (INSA), Portugal 10:30 Future Panel: Q&A Chair by: Maria De Belém Roseira Member of Parliament, Portugal 11:15 Coffee/tea break
Session 2 Current Issues and Future Challenges of Genome-based Information and Technology (GBIT) Translation
11:30 Presentations by Panel of experts: Martina Cornel University of Amsterdam, The Netherlands Regine Kollek University of Hamburg, Germany Jorge Sequeiros University of Porto, Portugal Fred Paccaud
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University of Lausanne, Switzerland 12:00 Future Panel: Q&A Chair by: Yvonne Gilli Member of Parliament, Switzerland
12:45 Lunch
13.45 Guide visit to the Portuguese Parliament
Session 3 Governance in Public Health Genomics
14:00 Presentations by Panel of experts: Irene Norstedt
Unit Personalised Medicine, Directorate General Research & Innovation, European Commission
Laurence Lwoff
Committee on Bioethics, Council of Europe Klaas Dolsma
"Erfocentrum" centre, The Netherlands Constantino Sakellarides National School of Public Health, Portugal
14:30 Future Panel: Q&A Chair by: Jens Henrik Thulesen Member of Parliament, Denmark
15:15 Coffee break 15:30 Statements by the Members of the Future Panel
Debate Session Challenges and Policy Options on Public Health Genomics
15:45 Debate with the participation of the audience
Moderator: Jan Staman Rathenau Institute, The Netherlands
Closing of the day
17:15 Maria de Belém Roseira
Member of Parliament, Portugal
17:30 End
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Members of the Future Panel and Panel of Experts
Session 1: Developments in Medical Genomics Research
Chair by the member of the Future Panel:
Maria de Belém Roseira
Born on 1949 in Oporto. Graduated in Law at the University of Coimbra in 1972. Former Portuguese
Ministry of Health between 1995 and 1999 and President of General Assembly of World Health
Organization in 1999. Plays an active role as a spokesperson of several social institutions in Portugal.
Former President of the Parliamentary Committee of Health where it has developed work related to
medically assisted reproduction law. Currently President of the Socialist Party and Member of the
Portuguese Parliament.
Panel of Experts
Iñaki Gutierrez Ibarluzea
Knowledge Manager and Coordinator of the
early awareness and alert system of Osteba,
the Basque Office for HTA. He is currently the
chairman of EuroScan, the International
Network for the identification and assessment of
new and emerging health technologies. He is
also professor at the Nursing School of the
Basque Health Service Osakidetza and member
and co-coordinator of the Spanish National
TaskForce on Genomics.
Alastair Kent
Director of Genetic Alliance UK, an organization of
over 160 patient organizations which seeks to
promote public understanding of the needs of
patients with all forms of genetic disorders, ranging
from extremely rare conditions arising from a
mutation in a single gene to common complex
disorders where genetic, environmental, lifestyle
factors combine with other factors to contribute to
the development of the condition. The Alliance
advocates for sustainable high quality biomedical
research that will translate into products, services
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and support for all who need to benefit from greater
genetic and genomic insights.
Cecile Janssens
Professor of translational epidemiology at
Emory University, Atlanta, USA. Her research
concerns the translation of genomics research
to applications in clinical and public health
practice, with a focus on the predictive ability
and utility of genetic testing for common
diseases. Cecile Janssens has published over
150 papers in international scientific journals
and received three prestigious personal grants,
most recently the ERC Starting grant. Before
moving to the USA, she was chair of the Dutch
Association of Community Genetics and Public
Health Genomics and board member of the
Netherlands Association for Human Genetics.
She still is an active member of the Health
Council of the Netherlands.
João Lavinha
Head of the R&D Unit, Human Genetics
Department, National Institute of Health, INSA,
Lisbon. He has held other positions at INSA over
the years, e.g., Head, Centre for Human Genetics
(2005-2008); Director-general (2000-2004); and
Head, Molecular Biology Laboratory, Human
Genetics Department (1993-2000). He is (co)-
author of 88 papers, 64 of which in international
peer-reviewed journals. His current research
interests include molecular etio-pathogenesis and
epidemiology of genetic disease, genetics of
disease susceptibility and public health genomics.
In 2012 he was appointed to the Portuguese
National Council for Science & Technology.
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Session 2 : Current Issues and Future Challenges of Genome-based Information and
Technology (GBIT) Translation
Chair by the member of the Future Panel:
Yvonne Gilli
Born on 7th March 1957 in Switzerland. Medical doctor (MD) after studies in Zurich, runs her own medical
office as general practitioner in Wil since 1996 with focus on gynaecology and complementary medicine.
Member of the National Council of Switzerland since 2007, Member of the Finance Committee and the
Committee of Social Security and Health, vice-president of the parliamentary group of the Green Party.
Panel of Experts
Martina Cornel
Professor of community genetics and public
health genomics at the VU University Medical
Center in Amsterdam. She is a physician and
epidemiologist. She is involved in research on
genetic screening criteria, a pilot on
preconception screening for cystic fibrosis,
research on genetic education and the
international database for rare diseases
(Orphanet). She teaches medical students and
health science students in the areas of health
promotion and large scale applications of
genetics & genomics and is involved in
Regine Kollek
Holds a PhD in molecular biology from the University of
Würzburg (Germany), before spending two years at the
Medical School of the University of California, San Diego
(USA). From 1981 to 1984, she was senior researcher at
the Heinrich-Pette Institute at the University of Hamburg
(Germany). Her research focuses on the ethical and
societal implications of modern biotechnology and
genetics in medicine. Her latest books are on predictive
genetic diagnosis (2008) and on pharmacogenetics and
individualized therapy (2004). She is member of the
German Ethics Council and of the International Bioethics
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postgraduate training in these areas. Committee of UNESCO.
Jorge Sequeiros
Doctor specialized in Genetics and Internal
Medicine and Professor at Institute of Medical
Sciences from the University of Porto.
Administrator of the Centre for Preventive and
Predictive Genetics, an institution focused in
Genetics and Genetic Counselling. Currently
president of Medical Genetics Commission at
the Portuguese General Directorate for Health.
Member of Administration Board of the
European Society of Human Genetics (ESHG)
and Public and Professional Policies
Committee (PPPC) and Education Committee.
Frederic Paccaud
Professor of Public Health at the Faculty of Medicine de
Lausanne and the Director of the Institute for social and
preventive medicine. He sits on the Research Council
(medical sciences division) of the National Fund for
Scientific Research. He is also an Associate Professor at
both the University de Montréal and McGill University
Faculties of Medicine. After completing his medical
training in Switzerland, he pursued his specialty in
Belgium and London. His research interests were first
oriented towards public health information systems,
especially those concerning health services.
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Session 3: Governance in Public Health Genomics
Chair by the member of the Future Panel:
Jens Henrik Thulesen Dahl
Born on 20th July 1961 in Jutland, Denmark. Member of Parliament for the Danish People's Party in
Funen greater constituency from September 15th 2011. Candidate for the Danish People's Party in
Assens nomination district from 2010. Spokesman for prevention and spokesman for science and
research from 2011. Graduated in management at VIA University College in 2009. Holds a basic course
in adult education and a civil engineer degree granted by Aalborg University in 1985.
Panel of Experts
Irene Nordstedt
Head of Unit for the Innovative and Personalised
Medicine Unit it in the Health Research
Directorate in DG Research and Innovation. She
has been working with European life sciences
research aspects at the European Commission
since 1996. She was one of the key drivers for
setting up the Innovative Medicines Initiative
(IMI), a public private partnership between the
EC and the Pharmaceutical industry. Previous
responsibilities at the EC have primarily focused
Laurence Lwoff
Holds a MSc. in reproductive physiology from the
University of Paris VI – Jussieu (France). Obtained
a degree in agronomy from the Institut National
Agronomique Paris-Grignon (France) in 1986 and
received her PhD in molecular biology in 1989. In
1991 joined the Council of Europe with the
responsibilities of the Secretariat of the Conventions
concerning the use of animals in agriculture and
science, in the Directorate of Legal Affairs. Currently
the Secretary of the Committee on Bioethics(DH-
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on Small and Medium size Enterprises and
industry aspects of biotechnology and health
research at European level.
BIO), intergovernmental committee in charge of the
activities on the protection of human rights in the
biomedical field, at the Council of Europe.
Klaas Dolsma
Studied biology (evolutionary genetics) at the
University of Utrecht. After his study he worked
for the University of Amsterdam in the field of
Science Education. Later in his career, he was
involved in the development of educational
material, both print and on line, in several roles in
a number of publishing companies. Klaas Dolsma
now director of the Erfocentrum. The
Erfocentrum is the Dutch information centre on
genetics en hereditary diseases.
Constantino T. Sakellarides
Medical Doctor, University of Lisbon, (1967);
Obtained a Master in Epidemiology from the
University of Texas School of Public Health at
Houston ans also holds a PhD in Public Health,
from the same university. Currently is the Professor
Emeritus of Health Policy (National School of Public
Health, Universidade Nova, Lisbon); President of
the “Fundação para a saúde – SNS”. Between
1997 and 1999 was the Director-General of Health.
Later on, in 2000 was the responsible for the
foundation and coordination of Health Systems
Observatory.
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Member of the Future Panel
Vittorio Prodi
Born on 19th May 1937. Graduation degree in Physics from Bologna University. Worked as
university lecturer and researcher in leading national and international institutes and associate
professor in the Physics Department of the University of Bologna. Author of numerous
publications and of 5 international patents. From 1995 to 2004 was the Chairman of the
Provincial Council of Bologna. Member of the European Parliament since 2004 also plays an
active role in the promotion of renewable energies and green economy and in the fight against
climate change. Currently Member of the Committee on Industry, Research and Energy and
Substitute Member of the Committee on the Environment, Public Health and Food Safety. Also
Member of the Delegation for relations with the United States and Substitute Member of the
Delegation for relations with the People's Republic of China.
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List of Participants
Alastair Kent – Genetic Alliance UK (United Kingdom)
Ana Godinho – Foundation for Science and Technology (FCT) (Portugal)
Anders Jacobi - The Danish Board of Technology Foundation (Denmark)
André Krom – Rathenau Institute (Netherlands)
Anne Cambon-Thomsen – Toulouse University (France)
António Vaz Carneiro – Faculty of Medicine of Lisbon University (Portugal)
Cláudio Soares- ITQB (Portugal)
Conceição Lobo – Association for Innovation and Biomedical Research on Light (Portugal)
Constantino Sakellarides – National School of Public Health of Nova University (Portugal)
Dirk Stemerding – Rathenau Institute (Netherlands)
Edgaras Leichteris – Knowledge Economy Forum (Lithuania)
Fred Paccaud – Lausanne University (Switzerland)
Glória Isidro – National Health Institute Dr. Ricardo Jorge - INSA (Portugal)
Helena Machado – Institute of Social Sciences of Minho University (Portugal)
Heloísa Santos –DGS consultant (Portugal)
Henrique Barros - Institute of Public Health of the University of Porto (Portugal)
Iñaki Gutiérrez-Ibarluzea – Basque Office for Health Technology Assessment (Spain)
Irene Norstedt –Unit Personalised Medicine, DG Research and Innovation, European Commission (Belgium)
Jan Staman - Rathenau Institute (Netherlands)
Jens Henrik Thulesen Dahl - Member of Parliament (Denmark)
Joana Camilo - HORIZON 2020 National Contact Point, Foundation for Science and Technology (FCT) (Portugal)
João Gonçalves – National Health Institute Dr. Ricardo Jorge (Portugal)
João Lavinha – National Health Institute Dr. Ricardo Jorge (Portugal)
João Miguel Valente Cordeiro – National School of Public Health of Nova University (Portugal)
Jorge Sequeiro – Human Genetics Department of University of Porto (Portugal)
Joris Vermeesch – Leuven University (Belgium)
Klaas Dolsma – Erfocentrum Centre (Netherlands)
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Kristina Auruškevičienė- EU Support Division at the Ministry of Health (Republic of Lithuania)
Lars Kluver – The Danish Board of Technology Foundation (Denmark)
Laurence Lwoff – Bio-ethics Committee of the European Council (Strasbourg)
Leonhard Hennen – Karlsruhe Institute of Technology (Germany)
Lígia Martins – ITQB (Portugal)
Mara Almeida – ITQB (Portugal)
Marc Van den Bulcke – Scientific Institute of Public Health - WIV-ISP (Belgium)
Maria de Belém Roseira – Member of Parliament (Portugal)
Marta Jacinto – Portuguese Alliance of the Rare Disease Associations (Portugal)
Martina Cornel – Amsterdam University Medical Center (Netherlands)
Milena Paneque da Costa - Portuguese Association of Genetic Counselling Professionals (Portugal)
Pascal Messer- Rathenau Institute
Purificação Tavares – CGC Genetics (Portugal)
Raquel Seruca - Institute of Molecular Pathology and Immunology of the University of Porto (Portugal)
Regine Kollek - Hamburg University (Germany)
Rogério Ribeiro – Portuguese Diabetics Association (Portugal)
Romalda Baranauskienė- Mother and Child Health Department at the Ministry of Health (Republic of Lithuania)
Suéli Neves – ITQB (Portugal)
Vittorio Prodi – Member of European Parliament (Italy)
Yvonne Gilli – Member of Parliament (Switzerland)