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

1

Johan T. den Dunnen (The Netherlands) Xavier Estivill (Barcelona) Milan Macek (Czech Republic) Irmgard Nippert (Germany)

Joris Vermeesch (Belgium)

Mara Almeida (Portugal)

2

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)

3

Catherine Bourgain (France) Eugenijus Gefenas (Lithuania) Alastair Kent (UK) Fred Paccaud (Switzerland)

Marc van den Bulcke (Belgium)

Edgaras Leichteris (Lithuania)

4

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)