Transcript Executive Summary - Public Population Project in Genomics and

Public Population Project in
Genomics (P3G)
Send correspondence to:
Bartha Maria Knoppers
Chair of Interim Board
Centre de recherche en Droit Public
Université de Montréal
3101, Chemin de la tour
Montréal, (QC) H3T 1J7
[email protected]
Phone: +1 (514) 343-6714
Fax: +1 (514) 343-2122
http://www.p3gconsortium.org
Thomas J. Hudson
Director of Scientific Operations
McGill University and
Genome Quebec Innovation Centre
740 Dr. Penfield Avenue, Room 7105
Montréal, (QC), H3A 1A4
[email protected]
Phone: +1 (514) 398-3311 ext. 00385
Fax: +1 (514) 398-2262
Overview
The Public Population Project in Genomics (P3G) aims to create an
international consortium to foster collaboration between researchers
in the field of population genomics.
Our Vision:
Foster international harmonization for public projects in population genomics.
Our Goals:
 Understand the interaction between genes, environment, lifestyle and disease
 Create the engine for the transfer of this knowledge to health care systems
Our Approach:
International collaboration so as to ensure public access to population genomics data
according to prevailing ethical and legal norms.
Objectives
Objectives
Connect international public population
genomics projects for the creation of open,
public and accessible common genomics data
Deliverables
Public data leading to new scientific
discoveries in population health research
Provide necessary coordination and
standardization for data collection,
production, and storage, to facilitate
international collaboration, advance science
and maximize public health benefits
Common nomenclature and communication
tools required for seamless data sharing
Develop common understanding of the socioethical and legal issues
Ethical and legal framework for populationbased projects
Foster a deeper understanding of the relative
contribution of genetic and non-genetic
determinants to health and disease
Discovering linkages between genetics and
health
Transfer this knowledge to the international
community so as to optimize benefits for
public health care worldwide
Global access to common data including by
developing countries
Partner Projects
GenomEUtwin
Study 800,000 twin pairs from a collaborative European pool
of registries through a combination of genetic, epidemiology
and phenotype data for common diseases
Estonian Genome
Project
Collect data from up to one million participants into a
database, including health status, genomic DNA, plasma and
genealogical data
CARTaGENE
Obtain personal, medical and sociological data and biological
samples from 60 to 65,000 random participants for the study
of normal genetic variation
Consortium Model
An international resource for the coordination and exchange of ideas and
data that will be generated by the various population biobanks as well as
providing infrastructure support through specialized platforms.
Country
Cartagene
Country
GenomEuTwin
P3G
Estonia
Biobank
Country
Country
Country
Areas of Mutual Interest
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Harmonization of personal data collections common to different projects so that there
are some common nodes of identity in the biological, medical, demographic and social data
collected from participants
Maximum standardization in the list of common biological phenotypes collected by
each partner as well as agreement on methods and quality control
Compatible genotype/phenotype databanks and common nomenclature of levels of
identifiability of data and genomic/phenotypic variations
Coordination of rules of access to each other’s databanks while protecting confidentiality
subject to legal constraints, ethical review and governance
Development of security measures for the protection of genetic data and banks in
accordance with the highest international standards
Coordinated development of bioinformatics for compatible data mining and for clarity on
ownership/copyright issues
Sharing of approaches to public engagement, governance and intellectual property
issues
Exchange of experts and young researchers in many human and social scientific
disciplines in addition to biology, public health and genetics
Support for the transfer of knowledge and technology to other developed or developing
countries
Comparative evaluation and validation of research results and/or hypotheses on health
and disease
International leadership in the ethics of genomic and genetic research involving
populations
Initial Timelines (High Level)
2005
2004
Q1
Q2
Q3
Q4
Q1
Q2
Q3
Q4
Phase 1 – Planning and Funding
• Memorandum of Understanding
• Communicate globally with participating
projects
• Write detailed project plan for funding
• Secure funding for global operations
• Develop membership rules
Phase 2 – Implementation
• Creation of secretariat and interim board
• Creation of action plan
• Creation of forecast/deliverables tracking
system
Phase 3 – Deliverables
• Strengthen communications
• Collection of common data
• Promotion, marketing, communications
www.p3gconsortium.org
Send correspondence to:
Bartha Maria Knoppers
Chair of Interim Board
Centre de recherche en Droit Public
Université de Montréal
3101, Chemin de la tour
Montréal, (QC) H3T 1J7
[email protected]
Phone: +1 (514) 343-6714
Fax: +1 (514) 343-2122
Thomas J. Hudson
Director of Scientific Operations
McGill University and
Genome Quebec Innovation Centre
740 Dr. Penfield Avenue, Room 7105
Montréal, (QC), H3A 1A4
[email protected]
Phone: +1 (514) 398-3311 ext. 00385
Fax: +1 (514) 398-2262