Trust in Biobanking pp 189-196 | Cite as
The Role of P3G in Encouraging Public Trust in Biobanks
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Abstract
A key element in the success of a biobank is the trust and support of the public. Building this trust is a difficult process. The field of population genomics raises many ethical and societal issues that must be addressed in order for the public to see participation as a trustworthy activity. The Public Population Project in Genomics (P3G) is an international collaboration dedicated to bringing members of the population biobanking community together to share their expertise for the advancement of population genomics research. Through its fundamental principles of promotion of the common good, responsibility, mutual respect, accountability and proportionality, P3G seeks to create tools and resources to assist those involved in biobanks to conduct their research in such a way as to inspire the trust and participation of the public.
Keywords
Mutual Respect Global Public Good Optimize Collaborative Population Genomic Human Genome EpidemiologyPreview
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Literatur
- Beskow LM (2004) Ethical, legal and social issues in the design and conduct of human genome epidemiology studies. In: Khoury MJ, Little J, Burke W (eds) Human Genome Epidemiology. Oxford University Press, New YorkGoogle Scholar
- BBMRI (2008) European Biobanks. http://www.biobanks.eu. Accessed 13 March 2008Google Scholar
- CARTaGENE (2008) Information Leaflet. www.cartagene.qc.ca/accueil/documents/depliantEn.pdf. Accessed 13 March 2008Google Scholar
- Dixon-Woods M, Ashcroft RE, Jackson CJ et al (2007) Beyond "misunderstanding": Written information and decisions about taking part in a genetic epidemiology study. Soc Sci Med 65: 2212-2222Google Scholar
- EC (2007) European Commission Article 29 Data Protection Working Party. Opinion 4/2007 on the concept of personal data. http://ec.europa.eu/justice_home/fsj/privacy/docs/wpdocs/2007/wp136_en.pdf. Accessed 17 March 2008.Google Scholar
- Emanuel EJ, Wendler D, Grady C (2000) What makes clinical research ethical? JAMA 283: 2701-2711Google Scholar
- ENGAGE (2008) European Network of Genomic and Genetic Epidemiology. www.euengage.org. Accessed 17 March 2008.Google Scholar
- GAIN Collaborative Research Group (2007) New models of collaboration in genome-wide association studies: The Genetic Association Information Network. Nat Genet 39: 1045-1051Google Scholar
- HUGO (2002) Hugo Ethics Committee Statement On Human Genomic Databases. www.hugointernational. org/Statement_on_Human_Genomic_Databases.htm. Accessed 16 March 2008Google Scholar
- Knoppers BM and Joly Y (2007) Our social genome? Trends Biotechnol 25: 284-288Google Scholar
- Knoppers BM, Fortier I, Legault D et al (2008) The Public Population Project in Genomics (P3G): A proof of concept? Eur J Hum Genet 16: 664-665Google Scholar
- P3G (2007a) Canada’s new government and Quebec government makes one of the largest investments in international genomics research. www.p3gconsortium.org/news/P3G_pressrelease_English_May192007.pdf. Accessed 5 March 2008Google Scholar
- P3G (2007b) P3G Biobank Lexicon. www.p3gobservatory.org/biobankLexicon.do. Accessed 16 March 2008.Google Scholar
- P3G (2008a) Charter of Fundamental Principles. www.p3gobservatory.org/download/publications/P3gfundamentalprinciples.pdf. Accessed 13 March 2008Google Scholar
- P3G (2008b) DataSHaPER (Data Schema and Harmonization Platform for Epidemiological Research). http://www.p3gobservatory.org/scientificAction.do. Accessed 13 March 2008Google Scholar
- P3G (2008c) Ethics, Governance and Public Engagement. www.p3gobservatory.org/ethics.do. Accessed 13 March 2008Google Scholar
- P3G (2008d) Summer newsletter. www.p3gconsortium.org/news/P3GNewsLetter4.pdf. Accessed 13 March 2008Google Scholar
- P3G (2008e) Membership. 2008 www.p3gconsortium.org/memb.cfm. Accessed 13 March 2008Google Scholar
- P3G Observatory (2008a) P3G Observatory. www.p3gobservatory.org/welcome.do. Accessed 13 March 2008Google Scholar
- P3G Observatory (2008b) Cross-sectional Questionnaire Catalogue. www.p3gobservatory.org/questionnaireSearch.do?methodToCall=executeGetQuestionnaireCatalog. Accessed 13 March 2008Google Scholar
- P3G Observatory (2008c) P3G Observatory Study Catalogue. www.p3gobservatory.org/study Search.do?methodToCall=executeGetStudyCatalog. Accessed 13 March 2008Google Scholar
- PHOEBE (2008) Promoting Harmonisation of Epidemiological Biobanks in Europe. www.phoebe-eu.org/eway/?pid=271. Accessed 13 March 2008.Google Scholar
- Smith GD, Ebrahim S, Lewis S et al (2005) Genetic epidemiology and public health: hope, hype and future prospects. Lancet 366: 1484-1498Google Scholar
- UK Biobank (2007) UK Biobank Information Leaflet. www.ukbiobank.ac.uk/docs/infoleaflet 0607.pdf. Accessed 13 Sep 2007Google Scholar
- UDBN (2008) UK DBA Banking Network DNA quantitation project. www.dna-network.ac.uk/DNA+quantitation+project. Accessed 12 March 2008.Google Scholar
- Wallace S, Lazor S, Knoppers BM (2008) Consent and population genomics: The creation of generic tools. (submitted)Google Scholar
- Wellcome Trust Case Consortium (2007) Genome-wide association study of 14,000 cases of seven common diseases and 3,000 shared controls. Nature 447: 661-678Google Scholar
- Williams G, Schroeder D (2004) Human genetic banking: altruism, benefit and consent. New Genet Soc 23: 89-103Google Scholar