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Objective: To provide data on how screen-positive and detection rates of first trimester prenatal screening for fetal Down syndrome vary with changes in the risk cut-off and maternal age to inform contingency criteria for publicly funded noninvasive prenatal testing., Materials and Methods: First trimester screening and diagnostic data were collected for all women attending for first trimester fetal aneuploidy screening in Western Australia between 2005 and 2009. Prenatal screening and diagnostic data were linked to pregnancy outcomes, including data from the Midwives' Notification System and the Western Australian Registry of Developmental Anomalies. The prevalence of Down syndrome and performance of screening by risk cut-off and/or for women >35 years were analysed., Results: The current screening risk cut-off of 1:300 has screen-positive and detection rates of 3.5% and 82%. The screen-positive rate increases by 0.7-0.8% for each 100 point change in risk, up to 19.2% at 1:2500 (96% detection rate). Including all women >35 years as screen positive would increase the screen-positive rate and detection rates to 30.2% and 97.2%., Conclusion: Variation in screening risk cut-off and the use of maternal age to assess eligibility for noninvasive testing could significantly impact the demand for, and cost of, the test. A contingent first trimester screening approach for risk assessment is superior to the use of a combination of screening and maternal age alone. These data will inform decisions regarding the criteria used to determine eligibility for publicly funded noninvasive prenatal testing., (© 2016 The Royal Australian and New Zealand College of Obstetricians and Gynaecologists.)

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.

Aims: To examine the costs, outcomes and cost savings of three models of prenatal cystic fibrosis (CF) carrier screening compared to no screening from a public health sector perspective., Methods: A decision tree was generated to estimate costs and outcomes for each screening model for a hypothetical cohort of 38 000 pregnancies. Sensitivity analysis assessed the impact of model parameter variation., Results: Under baseline assumptions, the initial annual cost to provide a prenatal CF carrier-screening programme is Au$5.32 million, Au$3.35 million and $2.93 million for one-step, two-step simultaneous and two-step sequential screening respectively. Annual costs are significantly lower for an established programme. No screening model provides a net saving over a lifetime horizon; however, the results were sensitive to variation in lifetime cost of care, screening test costs and number of pregnancies per carrier couple., Conclusions: Under some scenarios, prenatal CF carrier screening is cost saving to the health system; however, this is not conclusive and depends on several factors. Cost remains a potential barrier due to the substantial level of funding required in the short term. Feasibility and psychosocial, ethical and legal implications of screening need to be considered. Additionally, consultation is required with the Australian community on the acceptability and/or desire for prenatal CF carrier screening.

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. [ABSTRACT FROM AUTHOR]

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. Copyright © 2011 S. Karger AG, Basel [ABSTRACT FROM AUTHOR]