Documentation of the 2nd PHGEN Network Meeting
"Public Health Genomics in Europe – Assessment and Policy Development”
Rome, January, 31st until February, 2nd 2007
I. Reports from Activities
• Peter Schröder: PHGEN in 2006 and Working Schedule for Rome and 2007
• Marcella Rietschel: Report from the Steering Group
• Mohamed A. Karmali: GRaPH-Int Activities in the last year
II. Complementarities and Working Groups
• Jean-Jacques Cassiman: An update on the work of EuroGentest
• Ulf Kristoffersson: Definitions in EuroGentest
• Nicole Rosenkötter: The Glossary in the Italian Journal of Public Health
• Rozá Ádány: Genetic Epidemiology in Europe- a detailed literature
overview carried out in the SPHERE EC-Project
IV. Final Comments on the Working Groups 2 & 3 Papers
• WG 2 (Peter Schröder, Ron Zimmern)
• WG 3 (Nicole Rosenkötter, Hilary Burton, Ron Zimmern, Angela Brand)
V. PHGEN National Task Forces
• Angela Brand: The NTF Initiation and Fact Sheets
Reports of the NTFs
• Ügür Özbek: NTF Turkey
• Stefania Boccia/ Walter Ricciardi: NTF Italy
• Jean-Jacques Cassiman: NTF Belgium
• João Lavinha: NTF Portugal
• Tobias Schulte in den Bäumen: NTF Germany
• Núria Malats: NTF Spain
• Cecile Janssens: NTF Netherlands
VI. New Working Groups: Impulse, Brainstorming, Discussion
• H. Brand: Policy Development as a Tool in Public Health
• T. Schulte in den Bäumen: Policy Development and Regulation
VII. New Working Groups: Impulse, Brainstorming, Discussion ctd.
• WG 5: Cross Sectional Working Group on Ethical Benchmarks (P. Dabrock/
• WG 6: Policy Development for Education and Training (H.Burton/
• WG 8: Policy Development for Public Health Assessment (A. Brand/ F.
• WG 9: Policy Development for Public Policy and Stakeholder Involvement
(S. Savas/ H. Brand)
VIII. Lecture and Discussion
• Muin Khoury: Why Do We Need Public Health in the Era of Genomic
Documentation of the PHGEN 1st Network Meeting:
"Assessing Issues and Priorities of Public Health Genomics" Bielefeld, February, 8th & 9th 2006
II. Public Health Genomics European Network (PHGEN)
• Dolores Ibarreta: A European Perspective on Public Health Genomics
• Peter Schröder: Workplan, Organisational Issues, Short Questionnaire,
III. Assessing Issues and Priorities of Public Health Genomics
• Peter Schröder: Is Genome-based Knowledge Exceptional? A Crucial
Question for PHG
• Anne Cambon-Thomson: Biobanks and Public Health Genomics
• Ingeborg Blancquaert: The Role of Health Technology Assessment in Public
• Niels Würgler Hansen: From Research to Policy – Is Health Technology
Assessment the Bridge?
IV. Assessing Issues and Priorities of Public Health Genomics
• Ron Zimmern and Hilary Burton: The Enterprise of Public Health Genomics
V. Public Health Genomics and Expectations
• Steffen Stürzebecher: Public Health Genomics and the Commercial Sector
Peter Liese: PHG and Expectations of the European Parliament
VII. Summary and Next Steps
Ingeborg Blancquaert: Perspectives of PHGEN – External View
Ron Zimmern: Perspectives of PHGEN – Internal View
• Helmut Brand: Closing of the Meeting and Next Steps
PHGEN I Final Report
Press Release 2/2006
PHGEN I ended in March 2009. PHGEN II continued at Maastricht University and was led by Prof. Dr. Angela Brand. PHGEN II has officially ended on 30 November 2012 with the reporting period ending on 30 January 2013.
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PHGEN II as a Success Story, Biobanks and Personalized Medicine
PHGEN II has been selected as one of the success stories funded by the EU heath programs. The detailed report can be found here. PHGEN II has also been mentioned in the report of the European Commission expert group on biobanks and can be found here. Further our project has been pubished in the European Science Foundation's 'Personalised Medicine for the European Citizen' and can be found here.
Meeting of European Alliance for Personalised Medicine
Commissioner Dalli (speech) and Cyprus Minister Mavroyiannis launched in Brussels on 18 September 2012 the manifesto by the newly-formed European Alliance for Personalised Medicine (EAPM), which brings together patient groups, academia, health professionals and industry, as well as the European Commission and the European Medicines Agency. This news has been covered by APM Health and the European Parliament Magazine. Click here for the picture of our PHGEN coordinator discussing with Commissioner Dalli.
During the final meeting in April 2012 in Rome, the PHGEN II European Best Practice Guidelines for Quality Assurance, Provision and Use of Genome-based Information and Technologies have been officially endorsed as the "Declaration of Rome 2012" by the European Member States as well as European key Institutions and Organizations such as EMA. The "Declaration of Rome 2012" has been published in the Journal "Drug Metabolism and Drug Interactions". It can be downloaded for free at the journal website here. Also a related editorial has also been published in the same journal which can be found at the journal website here. The "Declaration of Rome 2012" is the summary of the European Best Practice Guidelines for Quality Assurance, Provision and Use of Genome-based Information and Technologies produced in the form of 3 individual reports (QA, Provision & Use) by the PHGEN II consortium. These 3 parts can be accees below:
PHGEN II Extension Granted
Given the success of the project and realizing the deliverables go beyond the current deliverables, the PHGEN II project has been granted a 6 months cost netural extension by the EAHC. Therefore, the project will continue till the 30 November 2012. Originally the project was till 30 May 2012.
PHGEN II Final Meeting Rome
The PHGEN II final meeting (endorsement panel) took place in Rome, Italy. It was a success. Further information can be found here.
PHGEN II has released the definitions list which will be used as the guiding tools for the development of the guidelines. These constitute definitions developed during PHGEN I as well as new definitions. This can be found by clicking the link here.
The 3rd and final Steering Committee Meeting of PHGEN II took place on 23 February 2012 in Maastricht, The Netherlands. Further information can be found here.
ITFoM is one of six pilot projects in the European Future and Emerging Technologies Flagship scheme. These projects are vying for €1 billion funding from both the European Commission, Member States and other sources over ten years in order to generate a scientific revolution. Further information can be found from here.
Old information and news of PHGEN II can be found in the Archives here.
Public Health Genomics Journal
(Journal published in collaboration with GRaPH-Int)
'Public Health Genomics' is the first peer-reviewed international journal to focus on the translation of genome-based knowledge and technologies into public policy, disease prevention and the improvement of population health. It is a multidisciplinary bi-monthly forum containing conceptual and original research articles, editorials, reviews, short communications, country reports, case studies, viewpoints, news and various other features about the nature of public health genomics and related concepts.
For more details please visit http://www.karger.com/phg
PHGEN II is currently also developing a Wiki. This can be accessed here.
PHGEN II is coordinated by the Institute for Public Health Genomics (IPHG) at Maastricht University. The publication list contributed by partners of PHGEN II can be found here.
The IPHG coordinated the bachelor's program Public Health Genomics. The output of the successful course was a report made by the students with supervision from their supervisors. The report can be found here.
PHGEN II events have now officially ended.