1. http://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 knoppers@droit.umontreal.ca 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 tom.hudson@mcgill.ca Phone: +1 (514) 398-3311 ext. 00385 Fax: +1 (514) 398-2262 Public Population Project in Genomics (P3G)

2. 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.

3. Objectives Connect international public population genomics projects for the creation of open, public and accessible common genomics data Public data leading to new scientific discoveries in population health research ObjectivesObjectivesDeliverablesDeliverables Provide necessary coordination and standardization for data collection, production, and storage, to facilitate international collaboration, advance science and maximize public health benefits Develop common understanding of the socio- ethical and legal issues Transfer this knowledge to the international community so as to optimize benefits for public health care worldwide Foster a deeper understanding of the relative contribution of genetic and non-genetic determinants to health and disease Common nomenclature and communication tools required for seamless data sharing Ethical and legal framework for population- based projects Discovering linkages between genetics and health Global access to common data including by developing countries

4. 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

5. CountryCartageneCountry Estonia Biobank GenomEuTwin Country P3G 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. Consortium Model

6. Areas of Mutual Interest 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

7. Initial Timelines (High Level ) Q1 Q2 Q3 Q4 Q1 Q2 Q3 Q4 2004 2005 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

8. 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 knoppers@droit.umontreal.ca 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 tom.hudson@mcgill.ca Phone: +1 (514) 398-3311 ext. 00385 Fax: +1 (514) 398-2262 www.p3gconsortium.org