Document Detail

Reflexive governance in biobanking: on the value of policy led approaches and the need to recognise the limits of law.
MedLine Citation:
PMID:  21766192     Owner:  NLM     Status:  Publisher    
Although a few jurisdictions around the world have legislated in response to the phenomenon of biobanking, the far more common response has been policy led with funders and other stakeholders initiating multi-level policy initiatives to guide biobanking practice. An example of this is UK Biobank which has developed and operates according to an Ethics and Governance Framework. Such an instrument has no basis in law and yet it has played a crucial role in the set up and ongoing management of the resource. It will continue to do so, as related policies emerge, such as access and intellectual property policies. Numerous biobanking initiatives have similar high-level policy documents that guide decisions and practice. These are often framed as a commitment to participants, researchers and society more broadly and invoke notions such as the public good and the public interest. As such, they serve as a benchmark against which to measure a biobank's performance. Moreover, policies become an important means by which biobankers are held accountable. This article critically analyses this policy-driven phenomenon asking how effectively policy-often as an alternative to law-serves to police and to promote biobanking. It argues that a policy of reflexive governance-defined and developed herein-can best meet the challenges faced by many biobanks and without the need for recourse to law.
Graeme Laurie
Publication Detail:
Type:  JOURNAL ARTICLE     Date:  2011-7-16
Journal Detail:
Title:  Human genetics     Volume:  -     ISSN:  1432-1203     ISO Abbreviation:  -     Publication Date:  2011 Jul 
Date Detail:
Created Date:  2011-7-18     Completed Date:  -     Revised Date:  -    
Medline Journal Info:
Nlm Unique ID:  7613873     Medline TA:  Hum Genet     Country:  -    
Other Details:
Languages:  ENG     Pagination:  -     Citation Subset:  -    
The Arts and Humanities Research Council (AHRC) Research Centre for Studies in Intellectual Property and Technology Law, School of Law, University of Edinburgh, Old College, South Bridge, Edinburgh, EH8-9YL, Scotland, UK,
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