Skip to main content

Biobanking in Cancer Research

  • Chapter
  • First Online:

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

Chapter
USD   29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD   89.00
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Softcover Book
USD   119.99
Price excludes VAT (USA)
  • Compact, lightweight edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info
Hardcover Book
USD   169.99
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Learn about institutional subscriptions

References

  1. Parks A (2009) Biobanks. 10 Ideas changing the world right now. Time Magazine, March

    Google Scholar 

  2. Australian Government (2011) D.o.H. Factsheet Medicare Australia pdf

    Google Scholar 

  3. Etchegary H et al (2013) Community engagement with genetics: public perceptions and expectations about genetics research. Health Expect

    Google Scholar 

  4. Ahram M et al (2014) Factors influencing public participation in biobanking. Eur J Hum Genet 22:445–451

    Google Scholar 

  5. Riegman PH et al (2008) Biobanking for better healthcare. Mol Oncol 2(3):213–222

    Article  PubMed  Google Scholar 

  6. BBMRI (2013) Biobanking and Biomolecular Resources Research Infrastructure. November. www.bbmri.eu

  7. Henderson GE et al (2013) Characterizing biobank organizations in the U.S.: results from a national survey. Genome Med 5(1):3

    Google Scholar 

  8. Network ABNA. http://www.abna.org.au

  9. Network CTRnet. https://www.ctrnet.ca

  10. UK BioBank http://www.ukbiobank.ac.uk

  11. The Cancer Human Biobank – NCI. https://biospecimens.cancer.gov/programs/cahub

  12. 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

    Article  PubMed  PubMed Central  Google Scholar 

  13. Welinder C et al (2013) Establishing a Southern Swedish Malignant Melanoma OMICS and biobank clinical capability. Clin Transl Med 2(1):7

    Article  PubMed  PubMed Central  Google Scholar 

  14. 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

    Article  CAS  PubMed  Google Scholar 

  15. 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

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  16. Curtis C et al (2012) The genomic and transcriptomic architecture of 2,000 breast tumours reveals novel subgroups. Nature 486(7403):346–352

    CAS  PubMed  PubMed Central  Google Scholar 

  17. Hewitt R, Hainaut P (2011) Biobanking in a fast moving world: an international perspective. J Natl Cancer Inst Monogr 2011(42):50–51

    Article  PubMed  Google Scholar 

  18. https://www.nhmrc.gov.au/health-ethics/

  19. McGuire AL, Beskow LM (2010) Informed consent in genomics and genetic research. Annu Rev Genomics Hum Genet 11:361–381

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  20. Bathe OF, McGuire AL (2009) The ethical use of existing samples for genome research. Genet Med 11(10):712–715

    Article  PubMed  Google Scholar 

  21. 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

    Article  CAS  PubMed  Google Scholar 

  22. 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

    Article  CAS  PubMed  Google Scholar 

  23. 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

    Article  CAS  PubMed  Google Scholar 

  24. Bernard Lo M. The Research Ethics Blog. http://accelerate.ucsf.edu/blogs/ethics/biobank-genomics-research-do-we-need-patient-consent

  25. 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

    Article  CAS  PubMed  Google Scholar 

  26. Hudson KL (2011) Genomics, health care, and society. N Engl J Med 365(11):1033–1041

    Article  CAS  PubMed  Google Scholar 

  27. 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

    Article  PubMed  Google Scholar 

  28. Gaffney EF, Madden D, Thomas GA (2012) The human side of cancer biobanking. Methods Mol Biol 823:59–77

    Article  CAS  PubMed  Google Scholar 

  29. Allen MJ et al (2010) Human tissue ownership and use in research: what laboratorians and researchers should know. Clin Chem 56(11):1675–1682

    Article  CAS  PubMed  Google Scholar 

  30. Hakimian R, Korn D (2004) Ownership and use of tissue specimens for research. JAMA 292(20):2500–2505

    Article  CAS  PubMed  Google Scholar 

  31. 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

  32. ICGC. Goals, structure, policies and guidelines. http://icgc.org/icgc/goals-structure-policies-guidelines

  33. 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

    Article  PubMed  Google Scholar 

  34. Appelbaum PS et al (2014) Informed consent for return of incidental findings in genomic research. Genet Med 16:367–373

    Google Scholar 

  35. 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

    Google Scholar 

  36. 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

    Article  PubMed  PubMed Central  Google Scholar 

  37. 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

  38. National Health and Medical Research Council A (2009) Outcomes enabling grant funding rounds. https://www.nhmrc.gov.au/grants-funding/outcomes

  39. Vaught J, Rogers J, Myers K, Compton CC (2011) An NCI perspective on creating sustainable biospecimen resources. JNCI Monogr (42):1–7

    Google Scholar 

  40. 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

    Google Scholar 

  41. Kaye J (2012) Embedding biobanks as tools for personalised medicine. Norsk Epidemiologi, pp 169–175

    Google Scholar 

  42. 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

    Google Scholar 

  43. NCI (2013) Epidemiology and Genomics Research – cohort consortium. http://epi.grants.cancer.gov/Consortia/cohort.html

  44. consortium k (1997–2013) kConFab: A national consortium for research into families at high risk of breast cancer. www.kconfab.org

  45. ACC (2012) T.F.H.C.R.C.-T.A.C.C. http://www.fhcrc.org/en/labs/phs/projects/asia-cohort-consortium.html

  46. Australia TVG (1982) Human Tissue Act, D.f. Health, Editor

    Google Scholar 

  47. 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

    Google Scholar 

  48. 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

    Google Scholar 

  49. 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

    Google Scholar 

  50. 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

    Article  PubMed  Google Scholar 

  51. OECD Organization for Economic Cooperation and Development (2010) OECD guidelines on human biobanks and genetic research databases. Eur J Health Law 17:191–204

    Google Scholar 

  52. ISBER (2012) Best practices for repositories. Collection, storage, retrieval, and distribution of biological materials for research. Biopreserv Biobank 10:79–161

    Google Scholar 

  53. NCI (2011) Best practices for biospecimen resources. http://biospecimens.cancer.gov/bestpractices/2011

  54. 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

    Google Scholar 

  55. U.S. Department of Energy Washington, D.C., Implementation guide for quality assurance programs for basic and applied research

    Google Scholar 

  56. 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

    Google Scholar 

  57. 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

    Article  PubMed  Google Scholar 

  58. Betsou F et al (2009) Human biospecimen research: experimental protocol and quality control tools. Cancer Epidemiol Biomarkers Prev 18(4):1017–1025

    Article  PubMed  Google Scholar 

  59. ISO 9000:2005 (2011) Quality management systems – Fundamentals and vocabulary. http://www.iso.org/iso/catalogue_detail?csnumber=42180

  60. 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/

  61. 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

    Article  CAS  PubMed  Google Scholar 

  62. Harris JR et al (2012) Toward a roadmap in global biobanking for health. Eur J Hum Genet 20(11):1105–1111

    Article  PubMed  PubMed Central  Google Scholar 

  63. Centre for Cancer Genetic Epidemiology School of Clinical Medicine, C.U. iCOGS. 2013. http://ccge.medschl.cam.ac.uk/research/consortia/icogs/

  64. 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

    PubMed  PubMed Central  Google Scholar 

  65. Solutions Ae (2013) Transforming the practice of Pathology

    Google Scholar 

  66. AOCS Study (2013) http://www.aocstudy.org/gp_about.asp

  67. Office of the Australian Information Commission https://www.oaic.gov.au/privacy-law

  68. Commission TE (2013) Data protection

    Google Scholar 

  69. The Wellcome Trust https://www.wellcome.ac.uk/funding/managing-grant/policy-and-position-statements (2013)

  70. U.S. Dept of Health and Human Services. https://www.hhs.gov/hipaa

  71. OEDC (2009) Guidelines on human biobanks and genetic research databases. https://www.oecd.org/sti/biotech/44054609.pdf

  72. 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

    Article  PubMed  Google Scholar 

Download references

Author information

Authors and Affiliations

Authors

Corresponding authors

Correspondence to Lisa Devereux or Heather Thorne .

Editor information

Editors and Affiliations

Rights and permissions

Reprints 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

Publish with us

Policies and ethics