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P3G: Towards an International Policy Platform for Population Genomics

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Abstract

The widening scope of biobanking activities in recent decades necessitates purposeful networking that aggregates international efforts and expertise in population health research. To this end, the Public Population Project in Genomics and Society (P3G) has been able to streamline the process of establishing, operating and supporting the work of international biobanks since 2004. Since its inception, networking has been a central focus in all P3G initiatives. This chapter discusses P3G’s networking experiences and its evolving goals that have allowed for collaborative tool building and innovation in international biobank research. As a direct result of its networking initiatives, P3G (1) facilitates innovation, (2) improves data sharing and accessibility, and (3) continues to expand its service delivery to the international research community. Initially created to meet the increasing demands for an international consortium a decade ago, P3G has since allowed international biobanks to oversee the technical, organizational and infrastructural aspects of their research with confidence that the tools used to build them have been the product of collaboration and leadership in the field.

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References

  1. Murtagh MJ et al (2011) Realizing the promise of population biobanks: a new model for translation. Hum Genet 130(3):333–345. http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=3155676&tool=pmcentrez&rendertype=abstract. Accessed 8 Apr 2014

  2. Knoppers BM et al (2008) The public population project in genomics (P3G): a proof of concept? Eur J Hum Genet 16(6):664–665. http://dx.doi.org/10.1038/ejhg.2008.55. Accessed 18 Mar 2014

  3. Charter of Principles | Public population project in genomics and society. http://p3g.org/about-p3g/charter-principles. Accessed 18 Mar 2014b

  4. Fortier I, Doiron D, Burton P et al (2011) Invited commentary: consolidating data harmonization—how to obtain quality and applicability? Am J Epidemiol 174(3):261–264. Author reply 265–6. http://aje.oxfordjournals.org/content/174/3/261.long. Accessed 4 Apr 2014

    Article  PubMed  Google Scholar 

  5. Knoppers BM et al (2011) Towards a data sharing code of conduct for international genomic research. Genome Med 3(7):46. http://genomemedicine.com/content/3/7/46. Accessed 4 Apr 2014

    Article  PubMed  PubMed Central  Google Scholar 

  6. Church G et al. (2009) Public access to genome-wide data: five views on balancing research with privacy and protection. PLoS Gen 5(10):e1000665. http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2749921&tool=pmcentrez&rendertype=abstract. Accessed 19 Mar 2014

  7. Pascuzzi G, Izzo U, Macilotti M (eds) (2013) Comparative issues in the Governance of Reserach Biobanks. Springer, Verlag Berline Heidelberg, p 3

    Google Scholar 

  8. Ouellette S, Tassé AM (2014) P3G—10years of toolbuilding: from the population biobank to the clinic. Appl Transl Genom 3(2):36–40. http://www.sciencedirect.com/science/article/pii/S2212066114000064. Accessed 29 Apr 2014

  9. Founti P et al (2009) Biobanks and the importance of detailed phenotyping: a case study—the European Glaucoma Society GlaucoGENE project. Br J Ophthalmol 93(5):577–581. http://bjo.bmj.com/content/93/5/577.full. Accessed 11 Apr 2014

    Article  CAS  PubMed  Google Scholar 

  10. Wichmann H-E et al (2011) Comprehensive catalog of European biobanks. Nat Biotechnol 29(9):795–797. http://dx.doi.org/10.1038/nbt.1958. Accessed 11 Apr 2014

  11. Janjua NZ et al (2013) Tasman Spirit oil spill in Pakistan: research response and lessons learned. Am J Ind Med 56(1):124–131. http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=3418438&tool=pmcentrez&rendertype=abstract. Accessed 11 Apr 2014

  12. Rudan I, Marušić A, Campbell H (2011) Developing biobanks in developing countries. J Glob Health 1(1):2–4. http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=3484738&tool=pmcentrez&rendertype=abstract. Accessed 11 Apr 2014

  13. Fortier I, Doiron D, Little J et al (2011) Is rigorous retrospective harmonization possible? Application of the DataSHaPER approach across 53 large studies. Int J Epidemiol 40(5):1314–1328. http://ije.oxfordjournals.org/content/40/5/1314.long. Accessed 4 Apr 2014

    Article  PubMed  PubMed Central  Google Scholar 

  14. DataSHaPER. http://www.datashaper.org/definitions.htm;jsessionid=B90B0737B064A64F21D039F8E528B2B5. Accessed 25 Apr 2014c

  15. Henderson GE et al (2013) Characterizing biobank organizations in the U.S.: results from a national survey. Genome Med 5(1):3. http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=3706795&tool=pmcentrez&rendertype=abstract. Accessed 29 Apr 2014

  16. Eder J et al (2009) Information Systems for Federated Biobanks. In: Hameurlain A, Küng J, Wagner R (eds) Transactions on large-scale data- and knowledge-centered systems I. Springer Berlin Heidelberg, Berlin, Heidelberg, pp 156–190. http://www.springerlink.com/index/10.1007/978-3-642-03722-1. Lecture Notes in Computer Science. Accessed 25 Apr 2014

  17. Gottweis H, Lauss G (2012) Biobank governance: heterogeneous modes of ordering and democratization. J Community Genet 3(2):61–72. http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=3312942&tool=pmcentrez&rendertype=abstract. Accessed 25 Apr 2014

  18. Gibbons SMC (2009) Regulating biobanks: a twelve-point typological tool. Med Law Rev 17(3):313–346. http://medlaw.oxfordjournals.org/content/17/3/313.short. Accessed 25 Apr 2014

    Article  PubMed  Google Scholar 

  19. Scott CT et al (2012) Personal medicine—the new banking crisis. Nat Biotechnol 30(2):141–147. http://dx.doi.org/10.1038/nbt.2116. Accessed 25 Apr 2014

  20. Morente MM, Fernández PL, de Alava E (2008) Biobanking: old activity or young discipline? Semin Diagn Pathol 25(4):317–322. http://www.sciencedirect.com/science/article/pii/S0740257008000610. Accessed 25 Apr 2014

  21. Watson RWG, Kay EW, Smith D (2010) Integrating biobanks: addressing the practical and ethical issues to deliver a valuable tool for cancer research. Nat Rev Cancer 10(9):646–651. http://dx.doi.org/10.1038/nrc2913. Accessed 26 Mar 2014

  22. Muilu J, Peltonen L, Litton J-E (2007) The federated database—a basis for biobank-based post-genome studies, integrating phenome and genome data from 600,000 twin pairs in Europe. Eur J Hum Genet 15(7):718–723. http://dx.doi.org/10.1038/sj.ejhg.5201850. Accessed 25 Apr 2014

  23. Hansson MG (2011) Biobanking within the European regulatory framework: opportunities and obstacles. Biopreserv Biobank 9(2):165–167. http://online.liebertpub.com.proxy1.library.mcgill.ca/doi/abs/10.1089/bio.2010.0037. Accessed 26 Apr 2014

    Article  PubMed  Google Scholar 

  24. Wolfson M et al (2010) DataSHIELD: resolving a conflict in contemporary bioscience—performing a pooled analysis of individual-level data without sharing the data. Int J Epidemiol 39(5):1372–1382. http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2972441&tool=pmcentrez&rendertype=abstract. Accessed 16 Apr 2014

  25. Fortier I et al (2010) Quality, quantity and harmony: the DataSHaPER approach to integrating data across bioclinical studies. Int J Epidemiol 39(5):1383–1393. http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2972444&tool=pmcentrez&rendertype=abstract. Accessed 8 Apr 2014

  26. Fransson MN et al (2014) Toward a common language for biobanking. Eur J Hum Genet 23(1):22–28. http://dx.doi.org/10.1038/ejhg.2014.45. Accessed 26 Apr 2014

  27. P3G International Biobanking Summit V, in collaboration with McGill University, University of Louisville and ISBER, held in conjunction with the Europe Biobank Week, September 14, 2016, Vienna, Austria. http://europebiobankweek.eu/wp-content/uploads/sites/21/2016/04/EBW2016_Programme-Session-Details_8-IBS-V_20160623.pdf. Accessed 6 Oct 2016

  28. P3G International Biobanking Summit II, in collaboration with BioSHaRE.EU, BBMRI, ISBER, ESBB and BBMRI-LPC, held in conjunction with the BBMRI-ERIC Inauguration Conference, September 18, 2013, Graz, Austria. https://www.bioshare.eu/content/second-international-biobanking-summit. Accessed 13 May 2014f

  29. P3G/ELSI 2.0 Collaboratory Workshop: towards an International Ethics Safe Harbour: testing the accelerator, in collaboration with McGill University, September 3–4, 2013, Montreal, Canada. http://www.p3g.org/p3gcgpelsi-20-collaboratory-workshop-towards-international-ethics-safe-harbour-testing-accelerator. Accessed 9 May 2014

  30. Ozdemir V, Faraj SA, Knoppers BM (2011) Steering vaccinomics innovations with anticipatory governance and participatory foresight. OMICS 15(9):637–646. http://www.ncbi.nlm.nih.gov/pubmed/21848419. Accessed 24 Apr 2014

  31. Jasanoff S (ed) (2004) States of knowledge: the co-production of science and social order. Routledge, London, UK

    Google Scholar 

  32. Dove ES, Joly Y, Knoppers BM (2012) Power to the people: a wiki-governance model for biobanks. Genome Biol 13(5):158. http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=3446283&tool=pmcentrez&rendertype=abstract. Accessed 13 May 2014

  33. Kaye J et al (2009) Data sharing in genomics—re-shaping scientific practice. Nat Rev Genet 10(5):331–335. http://dx.doi.org/10.1038/nrg2573. Accessed 25 Apr 2014

  34. Foster MW, Sharp RR (2007) Share and share alike: deciding how to distribute the scientific and social benefits of genomic data. Nat Rev Genet 8(8):633–639. http://dx.doi.org/10.1038/nrg2124. Accessed 18 Apr 2014

  35. Caulfield T et al (2014) A review of the key issues associated with the commercialization of biobanks. J Law Biosci 1(1):94–110. http://jlb.oxfordjournals.org/content/1/1/94.full. Accessed 19 Mar 2014

    Article  PubMed  PubMed Central  Google Scholar 

  36. Critchley CR, Bruce G, Farrugia M (2013) The impact of commercialisation on public perceptions of stem cell research: exploring differences across the use of induced pluripotent cells, human and animal embryos. Stem Cell Rev 9(5):541–554. http://www.ncbi.nlm.nih.gov/pubmed/23695820. Accessed 25 Apr 2014

  37. Joly Y et al (2012) Data sharing in the post-genomic world: the experience of the International Cancer Genome Consortium (ICGC) Data Access Compliance Office (DACO). PLoS Comput Biol 8(7):e1002549. http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=3395593&tool=pmcentrez&rendertype=abstract. Accessed 13 May 2014

  38. Knoppers BM et al (2013) Population studies: return of research results and incidental findings policy statement. Eur J Hum Genet 21(3):245–247. http://dx.doi.org/10.1038/ejhg.2012.152. Accessed 18 Mar 2014

  39. Dove ES, Knoppers BM, Zawati MH (2013) An ethics safe harbor for international genomics research? Genome Med 5(11):99. http://genomemedicine.com/content/5/11/99. Accessed 4 May 2014

    Article  PubMed  PubMed Central  Google Scholar 

  40. Kaye J et al (2012) Research priorities. ELSI 2.0 for genomics and society. Science (New York, NY) 336(6082):673–674. http://www.sciencemag.org/content/336/6082/673.short. Accessed 4 May 2014

  41. IPAC | Public Population Project in Genomics and Society. http://www.p3g.org/ipac. Accessed 25 Apr 2014d

  42. Burke W, Evans BJ, Jarvik GP (2014) Return of results: ethical and legal distinctions between research and clinical care. Am J Med Genet C Semin Med Genet 166(1):105–111. http://www.ncbi.nlm.nih.gov/pubmed/24616381. Accessed 21 Mar 2014

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Correspondence to Anne Marie Tassé .

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Rahimzadeh, V., Tassé, A.M., Ouellette, S., Knoppers, B.M., Fortier, I. (2017). P3G: Towards an International Policy Platform for Population Genomics. In: Hainaut, P., Vaught, J., Zatloukal, K., Pasterk, M. (eds) Biobanking of Human Biospecimens. Springer, Cham. https://doi.org/10.1007/978-3-319-55120-3_9

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