On 18 January 2014 a Policy Hearing – Future Panel on Public Health Genomics was held in the Portuguese Parliament, Assembleia da República (Lisbon) with the aim of identifying key policy issues and options concerning the future of public health genomics, offering an excellent opportunity for an open dialogue between parliamentarians/policy-makers and experts/stakeholders. The hearing, organised by the Instituto de Tecnologia Química e Biológica – Institute of Technology of Biology and Chemistry (Portugal), was accessible to the general public, who were invited to actively take part in the closing plenary debate.
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 had the opportunity to discuss potential implications of these examinations for policies on public health genomics.
Members of the Future Panel:
- Mrs. Maria De Belém Roseira (MP, Partido Socialista, Portugal) [above 2n on the left]
- Mrs. Yvonne Gilli (MP, Grüne Partei der Schweiz, Switzerland) [above 2nd on the righ]
- Mr. Jens Henrik Thulesen Dahl (MP, Dansk Folkeparti, Denmark) [above 1st on the left]
- Mr. Vittorio Prodi (MEP, Group of the Progressive Alliance of Socialists and Democrats/Partito Democratico, Italy/ STOA panel/ ENVI committee) [above 1st on the righ]
(Click on each link below to watch the corresponding video)
- Welcome: Maria Antónia de Almeida Santos, President of the Parliamentary Committee of Health, Portugal.
- Brief introduction to the meeting: Mara Almeida, ITQB, Portugal.
- Introduction to the European Future Panel on Public Health Genomics/ PACITA project: Dirk Stemerding, Rathenau Institute, The Netherlands.
Session 1: Developments in Medical Genomics Research
- Presentations by Panel of Experts: Iñaki Gutiérrez Ibarluzea (Basque Office for HTA, Spain), Alistair Kent (Genetic Alliance, UK), Cecille Janssens (Emory University, USA), João Lavinha (National Institute of Health (INSA), Portugal).
- Future Panel: Q&A, chaired by: Maria De Belém Roseira, member of Parliament, Portugal.
Session 2: Current Issues and Future Challenges of Genome-based Information and Technology (GBIT) Translation
- 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 (University of Lausanne, Switzerland).
- Future Panel: Q&A, chaired by:Yvonne Gilli, member of Parliament, Switzerland.
Session 3: Governance in Public Health Genomics
- 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) [above from right to left]
- Future Panel: Q&A, chaired by: Jens Henrik Thulesen, member of Parliament, Denmark
- Statements by the members of the Future Panel
Debate Session: Challenges and Policy Options on Public Health Genomics
- Debate with the participation of the audience. Moderator: Jan Staman (Rathenau Institute, The Netherlands).
Closing of the day
- Maria de Belém Roseira, member of Parliament, Portugal.