Literature DB >> 21645188

Blueprint for a deliberative public forum on biobanking policy: were theoretical principles achievable in practice?

Caron Molster1, Susannah Maxwell, Leanne Youngs, Gaenor Kyne, Fiona Hope, Hugh Dawkins, Peter O'Leary.   

Abstract

BACKGROUND: Public deliberation is recommended for obtaining citizen input to policy development when policies involve contested ethical dimensions, diverse perspectives on how to trade-off competing public interests and low public awareness of these perspectives. Several norms have been proposed for the design of deliberative methods. Evidence is scarce regarding whether such norms are achievable in practice.
PURPOSE: This paper refers to principles of deliberative democracy theory to describe a deliberative public forum on biobanking. Practical challenges and contextual facilitators of achieving deliberative ideals are discussed, along with factors that influenced use of the forum output in policy development.
METHOD: The forum ran for 4 days over two weekends in Perth, Western Australia. Key methodological features were socio-demographic stratification to randomly recruit a mini-public of citizens for discursive representation, provision of information inclusive of diverse perspectives and framed for difference, provision of a fair way for reasoning and collective decision making and adoption of processes to achieve publicity, accountability and independence from undue institutional influence.
RESULTS: Most design principles were achieved in practice, with the fundamental exception of representativeness. Factors influencing these outcomes, and the use of deliberated outputs to develop policy, included institutional characteristics, the design involvement of deliberative experts and quality of the outputs when compared to other consultation methods.
CONCLUSIONS: Public deliberations can achieve design ideals and influence (ethics-based) public health policy. The representation of 'hard to reach' citizens and their views needs further consideration, particularly as this relates to the procedural legitimacy of ethical analyses and the just inclusion of deliberative citizen advice within the broader policy-making process.
© 2011 John Wiley & Sons Ltd.

Mesh:

Year:  2011        PMID: 21645188      PMCID: PMC5060653          DOI: 10.1111/j.1369-7625.2011.00701.x

Source DB:  PubMed          Journal:  Health Expect        ISSN: 1369-6513            Impact factor:   3.377


  24 in total

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Review 4.  Data storage and DNA banking for biomedical research: informed consent, confidentiality, quality issues, ownership, return of benefits. A professional perspective.

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Journal:  Sociol Health Illn       Date:  2005-03

6.  Public consultation in ethics: an experiment in representative ethics.

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  18 in total

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