Public Population Project in Genomics
PG (Public Population Project in Genomics and Society) is a not-for-profit international consortium dedicated to facilitating collaboration between researchers and biobanks working in the area of human population genomics. PG is member-based and composed of experts from the different disciplines in the areas of and related to genomics, including epidemiology, law, ethics, technology, biomolecular science, etc. PG and its members are committed to a philosophy of information sharing with the goal of supporting researchers working in areas that will improve the health of people around the world. The Organization. PG is a  not-for-profit organization with members from over 40 countries. Membership falls under two different categories: Institutional and Individual. Institutional members have the right to elect and vote the board of directors of P³G, and all members are eligible for office. PG is headquartered in the McGill University Genome Quebec Innovation Centre, Montreal (Canada). Scientific Activities. Online. PG works with its members and other experts to develop tools, methods and resources designed to optimize and harmonize the infrastructures of biobanks and research projects in the areas of population genomics, epidemiology and the environment. The PG site is completely free and  accessible, and all documents, web sites and tools included on the site are non-commercial and open source. Such tools include: Toolkit - provides the epidemiological, ethical, statistical and IT instruments necessary to the access and use of data. The aim of this platform is to create a one-stop location and open access environment, where key documents are accessible to the research community. The TOOLKIT currently contains over 80 tools across five categories (Epidemiology and Biostatistics, Sample collection and processing, Data collection and processing, GE3LS, other tools). Lifespan - an open access web platform offering users a step-by-step approach  for the development and maintenance of a biobank or a research project within a definitive funding timeline. HUB - provides an online agora for all those interested in genetic and genomic research, allowing for ongoing discussion, exchange and collaboration on research projects. Training - provides researchers in the biobanking field with pertinent and up-to-date training opportunities Catalogs - currently provide information on large population-based biobanks. Over 160 studies, spanning all continents, are presently listed in the database, and this index is regularly updated and curated to include relevant studies. Meetings. In addition, PG bring its members together at meetings in  different cities around the world. These gatherings provide members with a unique opportunity to identify and address the challenges the community faces, share innovative strategies and work on new research tools. PG Meetings have been held in the following cities: IPAC. The IPAC (International Policy interoperability and data Access Clearinghouse) resource both promotes the interoperability of international norms and facilitates the sharing of clinical and research data. Building on the expertise of PG, the IPAC offers a “one-stop” service for national and international collaborative research projects, along with normative tools and frameworks that respect the laws and regulations of  each country while facilitating access. http://www.p3g.org/ipac IPAC Researchers Founded on the experience of the PG Research Platforms, the IPAC team includes the international expertise of ELSI (ethical/legal/social) research professionals. Domains: Regenerative Medicine; Gene Therapy; Cancer; Paediatrics; Incompetent Adults; Deceased Persons; Rare Diseases; Bioethics/Law. Issues: Biobanking; Consent; Access (Data/Samples); Commercialization; Confidentiality/Privacy; Research Ethics; Governance. Proficiency in: English; French; Spanish; Arabic; Mandarin. IPAC Services: I. Data/Sample Collection - ELSI Interoperability IPAC offers the following interoperability services: II. DACO - Review of Data and Samples Access Request/Authorization and Compliance III. PG DataTrust Due to concerns surrounding the return  of clinically significant results to research participants in the context of translational projects, PG has developed the DataTrust (DT) service. This service supports the process of re-contacting participants and returning individual-level results in translational research projects, when appropriate. The DataTrust (DT) proposes to provide PG as an honest and independent, third party broker to act as the key holder of personal information and associated unique ID (codes). PG-DT safeguards the independence of the research project team, while enhancing ethical compliance with privacy and confidentiality standards in the research setting. Finance and History. PG was incorporated in 2004  under the leadership of Bartha Knoppers and Dr. Thomas Hudson, and was established by and for researchers working in the area of population genetics. PG is funded by Genome Quebec and Genome Canada, as well as other funding agencies.