An Australian Approach to the Policy Translation of Deliberated Citizen Perspectives on Biobanking

Abstract

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.

Do Public Involvement Activities in Biomedical Research and Innovation Recruit Representatively? A Systematic Qualitative Review

“…(One study claimed to aim at both quantitative and qualitative representation, as the PIA included different phases with different objectives and methods.) This included for example ‘[…] the objective is not a statistically representative sample but a sample diverse in public perspectives' [32] and ‘[focus] group members were recruited to reflect a range of demographics, including age, education, race, ethnicity, gender, and socioeconomic status […]' [34] (for text-based examples on representation objectives and outcomes extracted from the original PIA studies, see online suppl. information 3).…”

“…17 studies instead described a random recruiting process, for example via residential telephone numbers, random invitation by letter or random selection from hospital registration files. Of these, 5 studies delegated the recruiting process to an external company, such as an ‘external market research agency' [32] or a ‘public opinion research firm' [4]. Eight PIA studies did not report their recruiting method.…”

“…Another study mentions ‘our aim was discursive representation' and ‘a sample diverse in public perspectives'. Still, it also mentions ‘[…] a lack of sociodemographic diversity which is problematic, because this indicator was adopted as a proxy measure of discursive representation' [32]. This example may relate to discursive representation, given that sociodemographic diversity was intended as proxy to achieve the (discursive) representation aim, and not vice versa.…”

Involving Citizen-Patients in the Development of Telehealth Services: Qualitative Study of Experts’ and Citizen-Patients’ Perspectives (Preprint)

“…Thus, public participation could help to make informed decisions and reach a consensus (or at least a compromise), which would increase the legitimacy and scope of the policies and programs implemented [28].…”

Informing Public Health Policy Through Deliberative Public Engagement: Perceived Impact on Participants and Citizen–Government Relations

“…We have previously reported on the perspectives of the commissioning agency, which initiated a forum designed to inform government policy on biobanking (Molster et al, 2012(Molster et al, , 2013. In this article, we use a case study approach to explore the outcomes of the biobanking deliberative forum from the participants' perspective.…”