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

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 fo...

Descripción completa

Detalles Bibliográficos
Publicado en:Health Expectations Vol. 16; no. 2; pp. 211 - 225
Autores principales: Molster, Caron, Maxwell, Susannah, Youngs, Leanne, Kyne, Gaenor, Hope, Fiona, Dawkins, Hugh, O'Leary, Peter
Formato: research tables/charts Journal Article
Publicado: Wiley-Blackwell Jun2013
Acceso en línea:Ver este registro en EBSCOhost
fields @attributes:
  recordID: 1
pdfLink:
plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=104284728&site=ehost-live
header:
  @attributes:
    shortDbName: ccm
    uiTerm: 104284728
    longDbName: CINAHL Complete
    uiTag: AN
  controlInfo:
    bkinfo:
    dissinfo:
    jinfo:
      jid:
        13696513
        EVY
      jtl: Health Expectations
      issn: 13696513
      maglogo: Y
    pubinfo:
      dt: Jun2013
      vid: 16
      iid: 2
      pid: 480
      pub: Wiley-Blackwell
      place: Malden, Massachusetts
    artinfo:
      ui:
        104284728
        87479025
        10.1111/j.1369-7625.2011.00701.x
        NLM21645188
        104284728
      ppf: 211
      ppct: 14
      formats:
        fmt:
          @attributes:
            type: P
      tig:
        atl: Blueprint for a deliberative public forum on biobanking policy: were theoretical principles achievable in practice?
      aug:
        au:
          Molster, Caron
          Maxwell, Susannah
          Youngs, Leanne
          Kyne, Gaenor
          Hope, Fiona
          Dawkins, Hugh
          O'Leary, Peter
        affil: Office of Population Health Genomics, Department of Health, Perth, WA
      sug:
        subj:
          Health Policy Psychosocial Factors
          Social Participation
          Politics
          Western Australia
          Human
          Male
          Female
          Adult
          Middle Age
          Aged
          Descriptive Statistics
          Data Analysis Software
          Summated Rating Scaling
          Funding Source
          Random Sample
          Adult: 19-44 years
          Middle Aged: 45-64 years
          Aged: 65+ years
          Male
          Female
      ab: 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.
      pubtype: Academic Journal
      doctype:
        research
        tables/charts
        Journal Article
      ougenre: Article
    language: English
    refInfo:
    holdings:
      @attributes:
        islocal: N