The global emergence of epidemiological biobanks: Opportunities and challenges

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

*Corresponding author for this work

Research output: Chapter in Book/Report/Conference proceedingChapter in a book

4 Citations (Scopus)

Abstract

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.

Original languageEnglish
Title of host publicationHuman Genome Epidemiology: Building the Evidence for Using Genetic Information to Improve Health and Prevent Disease: Second Edition
PublisherOxford University Press
ISBN (Print)9780199776023, 9780195398441
DOIs
Publication statusPublished - 1 May 2010

Keywords

  • Biobanking
  • Biobanks
  • Bioethics

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