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1.
Genet Test Mol Biomarkers ; 17(9): 713-8, 2013 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-23862565

RESUMEN

BACKGROUND: Deliberative public engagement has been proposed for policy development, where issues are complex and there are diverse public perspectives and low awareness of competing issues. Scholars suggest a range of potential outcomes for citizens and government agencies from involvement in such processes. Few studies have examined outcomes from the perspective of citizen participants in deliberative processes. AIMS: To examine participant perceptions of their involvement in and outcomes of a deliberative engagement exercise. METHOD: A case study using semistructured interviews was conducted with participants following a deliberative forum on biobanking. RESULTS: From their involvement in the deliberative exercise, participants described transformations in their knowledge and beliefs about the policy issues. They reported being more informed to the extent of having confidence to educate others and effectively contribute to public policy development. They had developed greater trust in government policymakers who they believed would take reasonable account of their recommendations. CONCLUSION: We conclude that the participants were satisfied with the outcomes of the deliberative public engagement process and viewed it as an effective means of citizen involvement in public policy development. Particularly for citizens who participate in deliberative processes, such processes may promote active citizenship, empower citizens to undertake representative and educative roles, and improve relations between citizens and government agencies. Actions taken by policymakers subsequent to the deliberative exercise, whereby the majority of citizen recommendations were incorporated in the policy developed, may have contributed to participants holding sustained levels of trust in the commissioning government agency.


Asunto(s)
Política de Salud , Educación del Paciente como Asunto , Formulación de Políticas , Femenino , Humanos , Entrevistas como Asunto , Masculino
2.
Public Health Genomics ; 15(2): 82-91, 2012.
Artículo en Inglés | MEDLINE | ID: mdl-22179074

RESUMEN

BACKGROUND: Deliberative public engagement is recommended for policy development in contested ethical areas. Scholars provide little guidance on how deliberative outputs can be translated to policy. This paper describes the processes we undertook to design a deliberative public forum for citizens to develop recommendations on biobanking that were adopted as health policy. METHOD: The 4-day forum, held in 2008 in Perth, Western Australia, was designed in collaboration with academic experts. Deliberant recommendations were recorded in a formal report presented to policy-makers. Deliberations were audio-taped and transcribed. Translation involved transcript analyses, comparison of recommendations to other stakeholder views and post-forum consultations. RESULTS: Sixteen citizens made recommendations on ethical, legal and social issues related to biobanking. Most recommendations were translated into biobanking guidelines, with which Western Australia government health agencies must comply. The value of deliberative public participation in policy-making was most evident when trade-offs in competing interests, hopes and concerns were required. Translation issues included the impact of a small number of participants with limited socio-demographic diversity on procedural and policy legitimacy. CONCLUSIONS: Assessing the sufficiency of diversity in citizen representation was central to the deliberation-to-translation process. Institutional context facilitated the uptake of deliberation and translation processes. The use of these processes influenced policy substance and credibility among stakeholders and contributed to the state government directive that policy compliance be mandatory. We urge others to publish deliberation-to-translation processes so that best-practices may be identified.


Asunto(s)
Bancos de Muestras Biológicas/ética , Bancos de Muestras Biológicas/legislación & jurisprudencia , Participación de la Comunidad , Formulación de Políticas , Opinión Pública , Testimonio de Experto , Femenino , Humanos , Masculino , Persona de Mediana Edad , Australia Occidental
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