Abstract
The availability of a biological resource such as human tissue and its derivatives for research that is fit for purpose and linked to well-annotated clinical data under approved ethical protocols is an essential facility for biomedical research, especially in the present era of personalized, translational medicine. The importance of these facilities have been recognized in the popular media with Time Magazine (2009) identifying biobanks as one of the ten tools of significance in recent times that have contributed to health and well-being [1]. Recent investments to upgrade the health department’s databases held by government and institutional registries, with electronic data mining and linkage tools, now means it is possible to perform data linkage to a specific disease, such as a cancer diagnosis and the related treatments but in addition, to have access to the other non-cancer related conditions and treatments so the effect of co-morbidities can be researched and the overall influence of the treatments determined. This important data linkage can be routinely performed by a biobank with the participant’s informed consent whilst still protecting the privacy and security of all personal information [2]. Access to the national health department’s clinical databases also provides practical and great economies to a biobank whose routine task is to perform clinical follow-up on all recruited participants. The reason being, the national health records database provides the additional clinical history and treatment regimen information that a bio-bank cannot currently obtain, as it is impractical for the biobank team to know about, or even try to cover, all hospital and/or general practitioner interactions that a biobank participant may have.
This is a preview of subscription content, log in via an institution.
Buying options
Tax calculation will be finalised at checkout
Purchases are for personal use only
Learn about institutional subscriptionsReferences
Parks A (2009) Biobanks. 10 Ideas changing the world right now. Time Magazine, March
Australian Government (2011) D.o.H. Factsheet Medicare Australia pdf
Etchegary H et al (2013) Community engagement with genetics: public perceptions and expectations about genetics research. Health Expect
Ahram M et al (2014) Factors influencing public participation in biobanking. Eur J Hum Genet 22:445–451
Riegman PH et al (2008) Biobanking for better healthcare. Mol Oncol 2(3):213–222
BBMRI (2013) Biobanking and Biomolecular Resources Research Infrastructure. November. www.bbmri.eu
Henderson GE et al (2013) Characterizing biobank organizations in the U.S.: results from a national survey. Genome Med 5(1):3
Network ABNA. http://www.abna.org.au
Network CTRnet. https://www.ctrnet.ca
UK BioBank http://www.ukbiobank.ac.uk
The Cancer Human Biobank – NCI. https://biospecimens.cancer.gov/programs/cahub
Eccles SA et al (2013) Critical research gaps and translational priorities for the successful prevention and treatment of breast cancer. Breast Cancer Res 15(5):R92
Welinder C et al (2013) Establishing a Southern Swedish Malignant Melanoma OMICS and biobank clinical capability. Clin Transl Med 2(1):7
Watson RW, 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
Michailidou K et al (2013) Large-scale genotyping identifies 41 new loci associated with breast cancer risk. Nat Genet 45(4):353–361, 361e1-2
Curtis C et al (2012) The genomic and transcriptomic architecture of 2,000 breast tumours reveals novel subgroups. Nature 486(7403):346–352
Hewitt R, Hainaut P (2011) Biobanking in a fast moving world: an international perspective. J Natl Cancer Inst Monogr 2011(42):50–51
McGuire AL, Beskow LM (2010) Informed consent in genomics and genetic research. Annu Rev Genomics Hum Genet 11:361–381
Bathe OF, McGuire AL (2009) The ethical use of existing samples for genome research. Genet Med 11(10):712–715
White MT, Gamm J (2002) Informed consent for research on stored blood and tissue samples: a survey of institutional review board practices. Account Res 9(1):1–16
Wendler D et al (2005) Quantifying the federal minimal risk standard: implications for pediatric research without a prospect of direct benefit. JAMA 294(7):826–832
Shah S et al (2004) How do institutional review boards apply the federal risk and benefit standards for pediatric research? JAMA 291(4):476–482
Bernard Lo M. The Research Ethics Blog. http://accelerate.ucsf.edu/blogs/ethics/biobank-genomics-research-do-we-need-patient-consent
Oliver JM et al (2012) Balancing the risks and benefits of genomic data sharing: genome research participants’ perspectives. Public Health Genomics 15(2):106–114
Hudson KL (2011) Genomics, health care, and society. N Engl J Med 365(11):1033–1041
Pullman D et al (2012) Personal privacy, public benefits, and biobanks: a conjoint analysis of policy priorities and public perceptions. Genet Med 14(2):229–235
Gaffney EF, Madden D, Thomas GA (2012) The human side of cancer biobanking. Methods Mol Biol 823:59–77
Allen MJ et al (2010) Human tissue ownership and use in research: what laboratorians and researchers should know. Clin Chem 56(11):1675–1682
Hakimian R, Korn D (2004) Ownership and use of tissue specimens for research. JAMA 292(20):2500–2505
Commission ALR (1996) Essentially yours: protection of human genetic information in Australia. http://www.alrc.gov.au/publications/essentially-yours-protection-human-genetic-information-australia-alrc-report-96
ICGC. Goals, structure, policies and guidelines. http://icgc.org/icgc/goals-structure-policies-guidelines
Wakefield CE et al (2013) Improving mutation notification when new genetic information is identified in research: a trial of two strategies in familial breast cancer. Genet Med 15(3):187–194
Appelbaum PS et al (2014) Informed consent for return of incidental findings in genomic research. Genet Med 16:367–373
Viberg J et al (2014) Incidental findings: the time is not yet ripe for a policy for biobanks. Eur J Hum Genet 22:437–441
Young MA et al (2013) The attitudes of people with sarcoma and their family towards genomics and incidental information arising from genetic research. Clin Sarcoma Res 3(1):11
Issues (2013) Anticipate and communicate. Ethical Management of Incidental and Secondary Findings in the Clinical, Research, and Direct-to-Consumer Contexts. December. http://www.bioethics.gov
National Health and Medical Research Council A (2009) Outcomes enabling grant funding rounds. https://www.nhmrc.gov.au/grants-funding/outcomes
Vaught J, Rogers J, Myers K, Compton CC (2011) An NCI perspective on creating sustainable biospecimen resources. JNCI Monogr (42):1–7
Watson PH, Wilson-McManus JE, Barnes RO, Giesz SC, Png A, Hegele RG, Brinkman JN, Mackenzie IR, Huntsman DG, Junker A, Gilks B, Skarsgard E, Burgess M, Aparicio S, McManus BM (2009) Evolutionary concepts in biobanking – the BC BioLibrary. J Transl Med 7:95
Kaye J (2012) Embedding biobanks as tools for personalised medicine. Norsk Epidemiologi, pp 169–175
Henderson GE, Cadigan RJ, Edwards TP, Conlon I, Nelson AG, Evans JP, Davis AM, Zimmer C, Weiner BJ (2013) Characterizing biobank organizations in the U.S.: results from a national survey. Genome Med 5:3
NCI (2013) Epidemiology and Genomics Research – cohort consortium. http://epi.grants.cancer.gov/Consortia/cohort.html
consortium k (1997–2013) kConFab: A national consortium for research into families at high risk of breast cancer. www.kconfab.org
ACC (2012) T.F.H.C.R.C.-T.A.C.C. http://www.fhcrc.org/en/labs/phs/projects/asia-cohort-consortium.html
Australia TVG (1982) Human Tissue Act, D.f. Health, Editor
Rogers J, Carolin T, Vaught J, Compton C (2011) Biobankonomics: a taxonomy for evaluating the economic benefits of standardized centralized human biobanking for translational research. J Natl Cancer Inst Monogr 2011(42):32–38
Vaught J, Rogers J, Carolin T, Compton C (2011) Biobankonomics: developing a sustainable business model approach for the formation of a human tissue biobank. J Natl Cancer Inst Monogr 2011(42):24–31
The Wellcome Trust (2011) Sharing research data to improve public health: full joint statement by funders of health research. The Wellcome Trust, UK, 10 January 2011
Fortier I, Doiron D, Burton P, Raina P (2011) Invited commentary: consolidating data harmonization—how to obtain quality and applicability? Am J Epidemiol 174:261–264
OECD Organization for Economic Cooperation and Development (2010) OECD guidelines on human biobanks and genetic research databases. Eur J Health Law 17:191–204
ISBER (2012) Best practices for repositories. Collection, storage, retrieval, and distribution of biological materials for research. Biopreserv Biobank 10:79–161
NCI (2011) Best practices for biospecimen resources. http://biospecimens.cancer.gov/bestpractices/2011
Betsou F, Gunter E, Clements J, DeSouza Y, Goddard KA, Guadagni F, Yan W, Skubitz A, Somiari S, Yeadon T, Chuaqui R (2013) Identification of evidence-based biospecimen quality-control tools: a report of the International Society for Biological and Environmental Repositories (ISBER) Biospecimen Science Working Group. J Mol Diagn 1:3–16
U.S. Department of Energy Washington, D.C., Implementation guide for quality assurance programs for basic and applied research
Riegman PH, Morente MM, Betsou F, de Blasio P, Geary P; Marble Arch International Working Group on Biobanking for Biomedical Research (2008) Biobanking for better healthcare. Mol Oncol 2:213–222
Carter A, Betsou F, Clark BJ (2011) Quality management and accreditation of research tissue banks. Virchows Arch 458(2):247–248, author reply 249–50
Betsou F et al (2009) Human biospecimen research: experimental protocol and quality control tools. Cancer Epidemiol Biomarkers Prev 18(4):1017–1025
ISO 9000:2005 (2011) Quality management systems – Fundamentals and vocabulary. http://www.iso.org/iso/catalogue_detail?csnumber=42180
Centers for Disease Control and Prevention (CDC) 24/7 (2013) Saving lives. Protecting people. Saving money through prevention. Clinical Laboratory Improvement Amendments (CLIA). http://wwwn.cdc.gov/clia/
Pukkala E (2011) Nordic biological specimen bank cohorts as basis for studies of cancer causes and control: quality control tools for study cohorts with more than two million sample donors and 130,000 prospective cancers. Methods Mol Biol 675:61–112
Harris JR et al (2012) Toward a roadmap in global biobanking for health. Eur J Hum Genet 20(11):1105–1111
Centre for Cancer Genetic Epidemiology School of Clinical Medicine, C.U. iCOGS. 2013. http://ccge.medschl.cam.ac.uk/research/consortia/icogs/
Webster JD et al (2011) Quantifying histological features of cancer biospecimens for biobanking quality assurance using automated morphometric pattern recognition image analysis algorithms. J Biomol Tech 22(3):108–118
Solutions Ae (2013) Transforming the practice of Pathology
AOCS Study (2013) http://www.aocstudy.org/gp_about.asp
Office of the Australian Information Commission https://www.oaic.gov.au/privacy-law
Commission TE (2013) Data protection
The Wellcome Trust https://www.wellcome.ac.uk/funding/managing-grant/policy-and-position-statements (2013)
U.S. Dept of Health and Human Services. https://www.hhs.gov/hipaa
OEDC (2009) Guidelines on human biobanks and genetic research databases. https://www.oecd.org/sti/biotech/44054609.pdf
Schroder C et al (2011) Safeguarding donors’ personal rights and biobank autonomy in biobank networks: the CRIP privacy regime. Cell Tissue Bank 12(3):233–240
Author information
Authors and Affiliations
Corresponding authors
Editor information
Editors and Affiliations
Rights and permissions
Copyright information
© 2016 Springer Science+Business Media LLC
About this chapter
Cite this chapter
Devereux, L., Thorne, H., Fox, S.B. (2016). Biobanking in Cancer Research. In: Lakhani, S., Fox, S. (eds) Molecular Pathology in Cancer Research. Springer, New York, NY. https://doi.org/10.1007/978-1-4939-6643-1_2
Download citation
DOI: https://doi.org/10.1007/978-1-4939-6643-1_2
Published:
Publisher Name: Springer, New York, NY
Print ISBN: 978-1-4939-6641-7
Online ISBN: 978-1-4939-6643-1
eBook Packages: Biomedical and Life SciencesBiomedical and Life Sciences (R0)