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Biobanking

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Encyclopedia of Global Bioethics

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Abstract

Human tissue is an invaluable resource for researchers worldwide. Moreover, the storage of DNA profiles in forensic databases can aid the fast resolution of crimes. Biobanks are repositories of such human tissue and can have a strategic importance for genetic research, clinical care, and future treatments. However, storage and use of biological specimens also raise a number of ethical questions. What are the risks associated with participating in biobank research? How should privacy and confidentiality be protected? As in other medical research, informed consent is an important prerequisite, but what is the scope of this consent? Can such consent be implicit? What if information that may be relevant to the donor of the material is found during research? Should this information be returned to the participant and by whom? Does the concept of human dignity apply to human tissue? Can human tissue truly be owned by researchers or institutions? These ethical questions are complicated if research participants are minors, and different aspects may be important depending on the cultural context.

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References

  • Alahmad, G., Al-Jumah, M., & Dierickx, K. (2012). Review of national research ethics regulations and guidelines in Middle Eastern Arab countries. BMC Medical Ethics, 13, 34. doi:10.1186/1472-6939-13-34.

    Article  Google Scholar 

  • Chadwick, R., & Berg, K. (2001). Solidarity and equity: New ethical frameworks for genetic databases. Nature Reviews Genetics, 2(4), 318–321.

    Article  Google Scholar 

  • Charo, R. A. (2006). Body of research–ownership and use of human tissue. The New England Journal of Medicine, 355(15), 1517–1519. doi:10.1056/NEJMp068192.

    Article  Google Scholar 

  • Eriksson, S., & Helgesson, G. (2005). Potential harms, anonymization, and the right to withdraw consent to biobank research. European Journal of Human Genetics: EJHG, 13(9), 1071–1076. doi:10.1038/sj.ejhg.5201458.

    Article  Google Scholar 

  • Hens, K., Van El, C. E., Borry, P., Cambon-Thomsen, A., Cornel, M. C., Forzano, F., … PPPC of the European Society of Human Genetics. (2013). Developing a policy for paediatric biobanks: Principles for good practice. European Journal of Human Genetics: EJHG, 21(1), 2–7. doi:10.1038/ejhg.2012.99.

    Google Scholar 

  • Hoeyer, K., Olofsson, B.-O., Mjörndal, T., & Lynöe, N. (2005). The ethics of research using biobanks: Reason to question the importance attributed to informed consent. Archives of Internal Medicine, 165(1), 97–100. doi:10.1001/archinte.165.1.97.

    Article  Google Scholar 

  • Lunshof, J. E., Chadwick, R., Vorhaus, D. B., & Church, G. M. (2008). From genetic privacy to open consent. Nature Reviews Genetics, 9(5), 406–411.

    Article  Google Scholar 

  • Ravitsky, V., & Wilfond, B. S. (2006). Disclosing individual genetic results to research participants. The American Journal of Bioethics: AJOB, 6(6), 8–17.

    Article  Google Scholar 

  • Shickle, D. (2006). The consent problem within DNA biobanks. Studies in History and Philosophy of Biological and Biomedical Sciences, 37(3), 503–519.

    Article  Google Scholar 

  • Wolf, S. M., Crock, B. N., Van Ness, B., Lawrenz, F., Kahn, J. P., Beskow, L. M., … Wolf, W. A. (2012). Managing incidental findings and research results in genomic research involving biobanks and archived data sets. Genetics in Medicine: Official Journal of the American College of Medical Genetics, 14(4), 361–384. doi:10.1038/gim.2012.23.

    Google Scholar 

Further Readings

  • Chadwick, R., Levitt, M., & Shickle, D. (2014). The right to know and the right not to know: Genetic privacy and responsibility. Cambridge, UK: Cambridge Bioethics and Law.

    Book  Google Scholar 

  • Dierickx, K., & Borry, P. (2009). New challenges for biobanks. Ethics, law and governance. Antwerpen: Intersentia.

    Google Scholar 

  • Kaye, J., & Stranger, M. (2012). Principles and practice in biobank governance. Farnham: Ashgate.

    Google Scholar 

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Author information

Authors and Affiliations

  1. Centre for Biomedical Ethics and Law, KU Leuven, Kapucijnenvoer 35/7001, 3000, Leuven, Belgium

    Kris Dierickx

  2. Department of Philosophy, University of Antwerp, Stadscampus, Rodestraat 14, 2000, Antwerp, Belgium

    Kristien Hens

Authors
  1. Kris Dierickx
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  2. Kristien Hens
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Corresponding author

Correspondence to Kris Dierickx .

Editor information

Editors and Affiliations

  1. Duquesne University Center for Healthcare Ethics, Pittsburgh, Pennsylvania, USA

    Henk ten Have

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© 2015 Springer Science+Business Media Dordrecht

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Dierickx, K., Hens, K. (2015). Biobanking. In: ten Have, H. (eds) Encyclopedia of Global Bioethics. Springer, Cham. https://doi.org/10.1007/978-3-319-05544-2_40-1

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  • DOI: https://doi.org/10.1007/978-3-319-05544-2_40-1

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  • Publisher Name: Springer, Cham

  • Online ISBN: 978-3-319-05544-2

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