Chapter

The global emergence of epidemiological biobanks: opportunities and challenges

Paul R. Burton, Isabel Fortier and Bartha M. Knoppers

in Human Genome Epidemiology, 2nd Edition

Published in print December 2009 | ISBN: 9780195398441
Published online May 2010 | e-ISBN: 9780199776023 | DOI: http://dx.doi.org/10.1093/acprof:oso/9780195398441.003.0005
 							The global emergence of epidemiological biobanks: opportunities and challenges

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This chapter discusses the emergence of biobanks around the world. Specifically, it considers the scientific role of biobanks and the scientific and ethico-legal challenges of biobanks. The science of biobanking faces a number of important challenges. However, two in particular would appear to be fundamental. From the perspective of the science, the primary challenge is to increase the quantity, quality, and utility of the information that will ultimately be stored as data and samples in the biobanks being set up today. On the ethico-legal side, the challenge is to ensure that everybody (governments, nongovernmental organizations, policy makers, funders, researchers, the general public, and study participants) understands what modern biobanking is really about, and that legal systems and ethical review mechanisms as applied to biobanks are therefore enabling and fit-for-purpose. Regulatory and governance systems must promote good practices — that facilitate effective science — without imposing risk or unnecessary cost on willing and consenting participants, and must enhance the prospect of legitimate information flow around the world.

Keywords: biobanks; bioethics; biobanking

Chapter.  10528 words.  Illustrated.

Subjects: Public Health and Epidemiology

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