Toward a roadmap in global biobanking for health

European Journal of Human Genetics

Volumn 20, Issue 11, 2012, Pages 1105-1111

  Harris, Jennifer R ^a   Burton, Paul ^b,c   Knoppers, Bartha Maria ^d   Lindpaintner, Klaus ^e,f   Bledsoe, Marianna ^g   Brookes, Anthony J ^b   Budin Ljosne, Isabelle ^a   Chisholm, Rex ^h   Cox, David ⁱ   Deschênes, Mylène ^c   Fortier, Isabel ^c,j   Hainaut, Pierre ^k   Hewitt, Robert ^l   Kaye, Jane ^m   Litton, Jan Eric ⁿ   Metspalu, Andres ^o   Ollier, Bill ^p   Palmer, Lyle J ^q   Palotie, Aarno ^r,s,t   Pasterk, Markus ^k   Perola, Markus ^u   Riegman, Peter H J ^v   Van Ommen, Gert Jan ^w,x   Yuille, Martin ^p   Zatloukal, Kurt ^y   more..

^a NORWEGIAN INSTITUTE OF PUBLIC HEALTH   (Norway)

^b UNIVERSITY OF LEICESTER   (United Kingdom)

^c Public Population Project in Genomics P3G   (Canada)

^d MCGILL UNIVERSITY   (Canada)

^e SDIX Inc   (United States)

^f Lindpaintner Biobanks Consulting   (Switzerland)

^g DEPARTMENT OF VETERANS AFFAIRS   (United States)

^h NORTHWESTERN UNIVERSITY   (United States)

ⁱ PFIZER INC   (United States)

^j MCGILL UNIVERSITY HEALTH CENTRE   (Canada)

^k INTERNATIONAL PREVENTION RESEARCH INSTITUTE   (France)

^l EUROPEAN HOSPITAL   (France)

^m UNIVERSITY OF OXFORD   (United Kingdom)

ⁿ KAROLINSKA INSTITUTE   (Sweden)

^o UNIVERSITY OF TARTU   (Estonia)

^p UNIVERSITY OF MANCHESTER   (United Kingdom)

^q ONTARIO INSTITUTE FOR CANCER RESEARCH   (Canada)

^r WELLCOME TRUST SANGER INSTITUTE   (United Kingdom)

^s UNIVERSITY OF HELSINKI   (Finland)

^t BROAD INSTITUTE OF MIT AND HARVARD   (United States)

^u NATIONAL PUBLIC HEALTH INSTITUTE   (Finland)

^v JOSEPHINE NEFKENS INSTITUTE   (Netherlands)

^w LEIDEN UNIVERSITY MEDICAL CENTER   (Netherlands)

^x Center for Medical Systems Biology   (Netherlands)

^y MEDICAL UNIVERSITY OF GRAZ   (Austria)

more..

Author keywords

[No Author keywords available]

Indexed keywords

ANALYTIC METHOD; ARTICLE; FUNDING; GOVERNMENT; HEALTH CARE FACILITY; HEALTH CARE PERSONNEL; HEALTH CARE POLICY; HEALTH CARE SYSTEM; HEALTH SCIENCE; HUMAN; INFORMATION PROCESSING; INVESTMENT; MEDICAL ETHICS; MEDICOLEGAL ASPECT; PATIENT CARE; PATIENT SAFETY; PRESERVATION AND STORAGE; PRIORITY JOURNAL; STANDARDIZATION;

BIOLOGICAL SPECIMEN BANKS; DATA COLLECTION; DATABASES, FACTUAL;

EID: 84867741263     PISSN: 10184813     EISSN: 14765438     Source Type: Journal    
DOI: 10.1038/ejhg.2012.96     Document Type: Article

References (44)

1. Organisation for Economic Co-operation and Development (OECD). Biological Resource Centres: Underpinning the Future of Life Sciences and Biotechnology. Paris: OECD, 2001.
2. Knoppers BM, Kent A: Policy barriers in coherent population-based research. Nat Rev Genet 2006; 7: 8.
3. The Wellcome Trust. Sharing research data to improve public health: full joint statement by funders of health research. UK: Wellcome Trust, 2011.
4. Fortier I, Doiron D, Burton P, Raina P: Invited commentary: consolidating data harmonization\how to obtain quality and applicability? Am J Epidemiol 2011; 174: 261-264.
5. Fortier I, Doiron D, Little J et al: Is rigorous retrospective harmonization possible? Application of the DataSHaPER approach across 53 large studies. Int J Epidemiol 2011; 40: 1314-1328.
6. Knoppers BM, Fortier I, Legault D, Burton P: The Public Population Project in Genomics (P3G): a proof of concept? Eur J Hum Genet 2008; 16: 664-665.
7. Organisation for Economic Co-operation and Development (OECD). OECD Guidelines on Human Biobanks and Genetic Research Databases, 2009; Organisation for Economic Co-operation and Development (OECD): Paris.
8. International Society for Biological and Environmental Repositories (ISBER): 2012 Best Practices for Repositories. Collection, Storage, Retrieval, and Distribution of Biological Materials for Research. Biopreserv Biobank 2012; 10: 79-161.
9. National Cancer Institute. National Cancer Institute (NCI) Best Practices for Biospeci-men Resources, 2011 (online). http://biospecimens.cancer.gov/ bestpractices/2011-NCIBestPractices.pdf.
10. Guerin JS, Murray DW, McGrath MM, Yuille MA, McPartlin JM, Doran PP: Molecular Medicine Ireland Guidelines for Standardized Biobanking. Biopreservation and Biobanking2010; 8: 3-63.
11. Yuille M, Illig T, Hveem K et al: Laboratory Management of Samples in Biobanks: European Consensus Expert Group Report. Biopreservation and Biobanking 2010; 8: 65-69.
12. Bevilacqua G, Bosman F, Dassesse T et al: The role of the pathologist in tissue banking: European Consensus Expert Group Report. Virchows Arch 2010; 456: 449-454.
13. Burton PR, Hansell AL, Fortier I et al: Size matters: just how big is BIG?: Quantifying realistic sample size requirements for human genome epidemiology. Int J Epidemiol 2009; 38: 263-273.
14. Hindorff LA, Sethupathy P, Junkins HA et al: Potential etiologic and functional implications of genome-wide association loci for human diseases and traits. Proc Natl Acad Sci USA 2009; 106: 9362-9367.
15. Spencer CC, Su Z, Donnelly P, MarchiniJ: Designing genome-wide association studies: sample size, power, imputation, and the choice of genotyping chip. PLoS Genet 2009; 5: e1000477.
16. Barabasi AL, Gulbahce N, Loscalzo J: Network medicine: a network-based approach to human disease. Nat Rev Genet 2011; 12: 56-68.
17. http://www.bbmri.eu/index.php/publications-a-reports Annex 16: Final Report from WP5. (accessed 17 May 2011).
18. Schofield PN, Eppig J, Huala E et al: Research funding. Sustaining the data and bioresource commons. Science 2010; 330: 592-593.
19. Knoppers BM, Chadwick R: Human genetic research: emerging trends in ethics. Nat Rev Genet 2005; 6: 75-79.
20. Chadwick R, Berg K: Solidarity and equity: new ethical frameworks for genetic databases. Nat Rev Genet 2001; 2: 318-321.
21. Prainsack B, Buy A: Solidarity: Reflections on an Emerging Concept in Biobanks. Swindon, UK: ESP Colour Ltd., 2011.
22. Human Genome Organisation (HUGO) Ethics Committee: Statement on human genomic databases, December 2002. J Int Bioethique 2003; 14: 207-210.
23. Yuille M, Dixon K, Platt A et al: The UK DNA banking network: a 'fair access' biobank. Cell Tissue Bank2010; 11: 241-251.
24. Knoppers BM, Harris JR, Tasse AM et al: Towards a data sharing Code of Conduct for international genomic research. Genome Med 2011; 3: 46.
25. Kaye J, Heeney C, Hawkins N, de VJ, Boddington P: Data sharing in genomics\re-shaping scientific practice. Nat Rev Genet 2009; 10: 331-335.
26. Wolfson M, Wallace SE, Masca N et al: DataSHIELD: resolving a conflict in contemporary bioscience\performing a pooled analysis of individual-level data without sharing the data. Int J Epidemiol 2010; 39: 1372-1382.
27. Knoppers BM, Harris JR, Burton PR et al: From genomic databases to translation: a call to action. J Med Ethics 2011; 37: 515-516.
28. Wagstaff A: International Biobanking Regulations: The Promise and the Pitfalls, 2011 Cancer World (online). http://www.cancerworld.org/pdf/3827-agina- 22-29-cuttingedge.pdf.
29. Open Researcher and Contributor ID (ORCID 2011). http://about.orcid.org/.
30. Birney E, Hudson TJ, Green ED et al: Prepublication data sharing. Nature 2009; 461: 168-170.
31. Ioannidis JP, Adami HO: Nested randomized trials in large cohorts and biobanks: studying the health effects of lifestyle factors. Epidemiology 2008; 19: 75-82.
32. Coriell Institute for Medical Research: Coriell Institute for Medical Research, Coriell Cell repositories, 2011.
33. Poste G: Bring on the biomarkers. Nature 2011; 469: 156-157.
34. Riegman PH, Morente MM, Betsou F, de BP, Geary P: Biobanking for better healthcare. Mol Oncol 2008; 2: 213-222.
35. Estonian Human Genes Research Act 2000; http://biochem118.stanford.edu/ Papers/Genome%20Papers/Estonian%20Genome%20Res%20Act.pdf.
36. Lindpaintner K: Biomarkers: call on industry to share. Nature 2011; 470: 175.
37. Murtagh MJ, Demir I, Harris JR, Burton PR: Realizing the promise of population biobanks: a new model for translation. Hum Genet 2011; 130: 333-345.
38. Yuille M, van Ommen GJ, Brechot C et al: Biobanking for Europe. Brief Bioinform 2008; 9: 14-24.
39. Biobanking and Biomolecular Resources Research Infrastructure (BBMRI) Final Report 2011; http://www.bbmri.eu/index.php?option=com-content&view= article&id=99&Itemid=78.
40. Cambon-Thomsen A: Assessing the impact of biobanks. Nat Genet 2003; 34: 25-26.
41. Cambon-Thomsen A, Thorisson GA, Mabile L et al: The role of a Bioresource Research Impact Factor as an incentive to share human bioresources. Nat Genet 2011; 43: 503-504.
42. Vaught JB, Caboux E, Hainaut P: International efforts to develop biospecimen best practices. Cancer Epidemiol Biomarkers Prev 2010; 19: 912-915.
43. Fortier I, Burton PR, Robson PJ et al: Quality, quantity and harmony: the DataSHaPER approach to integrating data across bioclinical studies. Int J Epidemiol 2010; 39: 1383-1393.
44. Lim MD, Dickherber A, Compton CC: Before you analyze a human specimen, think quality, variability, and bias. Anal Chem 2011; 83: 8-13.