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Human Genome Epidemiology, 2nd EditionBuilding the evidence for using genetic information to improve health and prevent disease$
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Muin Khoury, Sara Bedrosian, Marta Gwinn, Julian Higgins, John Ioannidis, and Julian Little

Print publication date: 2009

Print ISBN-13: 9780195398441

Published to Oxford Scholarship Online: May 2010

DOI: 10.1093/acprof:oso/9780195398441.001.0001

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The global emergence of epidemiological biobanks: opportunities and challenges

The global emergence of epidemiological biobanks: opportunities and challenges

(p.77) 5 The global emergence of epidemiological biobanks: opportunities and challenges
Human Genome Epidemiology, 2nd Edition

Paul R. Burton

Isabel Fortier

Bartha M. Knoppers

Oxford University Press

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

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