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 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.

An Australian approach to the policy translation of deliberated citizen perspectives on biobanking.

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.

Motivating intentions to adopt risk-reducing behaviours for chronic diseases: impact of a public health tool for collecting family health histories.

ISSUES ADDRESSED: In the genomics era the use of valid and reliable tools for the collection of family health histories is proposed as a strategy for identifying those at higher risk of chronic disease and increasing the adoption of risk-modifying behaviours.This study investigated the impact of a collection tool for a Family Health History Program in Western Australia upon uptake of key health messages and intentions to adopt risk-reducing behaviours for chronic diseases. METHODS: Initially a baseline population survey (n=1009) was undertaken to assess the collection of family health histories among adults and identify target populations for the tool. A targeted intercept survey (n=606) was then conducted with women to assess the tool. RESULTS: Around half the respondents indicated they were motivated to adopt one or more risk-reducing behaviours as a result of their exposure to the tool.The odds of being motivated to do something related to family health history were significantly greater for women who liked the too (AdjOR=3.1,95%Cl 2.1 4.5 ), thought it conveyed useful information (AdjOR=5.0, 95%Cl 2.6-9.6), perceived family history to be more important than before they read the tool (AdjOR=3.4, 95%Cl 2.3-4.9) and had not previously collected family health history information (AdjOR=1.8, 95%Cl 1.1-3.0). CONCLUSION: At a whole-of-population level most adults consider family health history important, but few have actually recorded this information. The tool raised awareness of the importance of family health histories to personal health and was considered personally useful by most respondents.

Compliance with professional guidelines with reference to familial cancer services.

OBJECTIVE: Professional guidelines define the risk categorisation of patients for a genetic predisposition to cancer based on family history. These guidelines inform the appropriate referral of patients to specialist familial cancer services. Our study aimed to determine the quality of referral letters from general practitioners and specialists to genetic services for breast, ovarian and colorectal cancers, and their compliance with relevant professional guidelines. METHODS: A retrospective review of the referral letters and patient files of 241 consecutive patients referred between June and October 2008. RESULTS: Sufficient information to make a risk assessment was provided in 71% of referrals. Of these, 89% were compliant with guidelines. Genetic counsellors collected further information on 167 of the 241 referred patients and of these 83% were appropriate for referral according to guidelines. CONCLUSIONS AND IMPLICATIONS: Overall, referrals to familial cancer genetic services complied with professional referral guidelines. The majority of referrals were high quality, and with additional information, most patients were shown to be appropriate for review in a familial cancer clinic. Despite this, a better understanding of the reasons for non compliant referrals, and appropriate targeted education and resources is recommended to improve referral quality and compliance.

Perceptions of population cystic fibrosis prenatal and preconception carrier screening among individuals with cystic fibrosis and their family members.

AIM: Our study aimed to quantitatively explore the perceptions of individuals with cystic fibrosis (CF) and their family members toward population prenatal and preconception CF carrier screening, including perceived benefits, concerns, and the acceptability of offering screening. METHOD: In November 2009, 258 members of the Cystic Fibrosis Association of Western Australia were invited via an e-mail newsletter to participate in a survey, with a link to an online survey tool. A further 246 members without e-mail access were mailed a paper copy of the survey. RESULTS: Overall, we found the majority of individuals with CF (n=27) and their families (n=122) had positive views of population CF carrier screening. However, the small number of individuals with CF represented in the study limits the interpretation of these data. CONCLUSION: From a public policy perspective, our findings overall suggest that in principle the views of family members are not a barrier to the introduction of population CF carrier screening. The views of individuals with CF warrant further investigation. Data such as ours should be used with other sources of information, such as economic evaluations and the perceptions of the general public, geneticists, and other medical practitioners to inform decisions regarding screening within the public health system.