Biobanking: Social, Political and Ethical Aspects

Abstract

Prospective, population‐based biobanks designed for research into genetic, environmental and lifestyle factors associated with common, complex diseases or the genetic basis of drug response have garnered significant interest over the past 10 years from bioethicists, social scientists, lawyers and other commentators. There are a series of interrelated but distinct social, political and ethical issues raised by biobanking: the challenges of creating governance structures that win public confidence in these novel and uncertain scientific initiatives; the establishment of appropriate systems of consent; determining the rights of ownership, commercial exploitation and benefit‐sharing among different stakeholders and the ways biobanks invoke ideas about human population differences and might serve to help address the health needs of minority groups in society.

Key concepts:

  • Biobanking is an activity that spans research and clinical contexts and is undertaken by public sector agencies, charities and commercial actors.

  • Biobanks should be understood as ‘sociotechnical’ enterprises that need to bring about novel arrangements for governance, gain the support of funders and the public, as well to develop scientific and technical procedures and infrastructures.

  • Biobanks are situated on the blurred lines of ‘public’ and ‘private’ and raise significant, controversial issues about the role of commercial interests in biomedical research and the distribution of benefits from the use of human tissue and information on individuals.

  • With the prospect of international networking of biobanks, questions of data sharing, consent, privacy and governance will remain significant and still need to be further debated and resolved.

Keywords: biobanks; genetic databases; consent; commercialization; governance

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Tutton, Richard(Jan 2010) Biobanking: Social, Political and Ethical Aspects. In: eLS. John Wiley & Sons Ltd, Chichester. http://www.els.net [doi: 10.1002/9780470015902.a0022083]