Public participation is increasingly an aspect of policy development in many areas, and the governance of biomedical research is no exception. There are good reasons for this: biomedical research relies on public funding; it relies on biological samples and information from large numbers of patients and healthy individuals; and the outcomes of biomedical research are dramatically and irrevocably changing our society. There is thus arguably a democratic imperative for including public values in strategic decisions about the governance of biomedical research. (...) However, it is not immediately clear how this might best be achieved. While different approaches have been proposed and trialled, we focus here on the use of public deliberation as a mechanism to develop input for policy on biomedical research. We begin by explaining the rationale for conducting public deliberation in biomedical research. We focus, in particular, on the ELS (ethical, legal, social) aspects of human tissue biobanking. The last few years have seen the development of methods for conducting public deliberation on these issues in several jurisdictions, for the purpose of incorporating lay public voices in biobanking policy. We explain the theoretical foundation underlying the notion of deliberation, and outline the main lessons and capacities that have been developed in the area of conducting public deliberation on biobanks. We next provide an analysis of the theoretical and practical challenges that we feel still need to be addressed for the use of public deliberation to guide ethical norms and governance of biomedical research. We examine the issues of: (i) linking the outcomes of deliberation to tangible action; (ii) the mandate under which a deliberation is conducted; (iii) the relative weight that should be accorded to a public deliberative forum vs other relevant voices; (iv) evaluating the quality of deliberation; and (5) the problem of scalability of minipublics. (shrink)

Generally, public opinion is measured via polls or survey instruments, with a majority of responses in a particular direction taken to indicate the presence of a given ‘public opinion’. However, discursive psychological and related scholarship has shown that the ontological status of both individual opinion and public opinion is highly suspect. In the first part of this article I draw on this body of work to demonstrate that there is currently no meaningful theoretical foundation for the construct of public opinion (...) as it is typically measured in surveys, polls, or focus groups. I then argue that there is a particular sense in which the construct of public opinion does make sense. In deliberative democratic forums participants engage in dialogue with the aim of coming to collective positions on particular issues. Here I draw on examples of deliberative democratic forums conducted on the social and ethical implications of science and technology. Conversation between participants in deliberative democratic forums is ideally characterized by individuals becoming informed about the issues being discussed, respectful interactions between participants, individuals being open to changing their positions, and a convergence towards collective positions in the interest of formulating civic solutions. The end-product of deliberation on a given issue might thus be termed a deliberative public opinion. ‘Deliberative public opinion’ is neither a cognitive nor an aggregate construct, but rather a socio-historical product. Criteria for its legitimacy rely on the inclusiveness of diversity of perspectives and the degree to which collective positions are defensible to a larger society. (shrink)

Because no single person or group holds knowledge about all aspects of research, mechanisms are needed to support knowledge exchange and engagement. Expertise in the research setting necessarily includes scientific and methodological expertise, but also expertise gained through the experience of participating in research and/or being a recipient of research outcomes. Engagement is, by its nature, reciprocal and relational: the process of engaging research participants, patients, citizens and others brings them closer to the research but also brings the research closer (...) to them. When translating research into practice, engaging the public and other stakeholders is explicitly intended to make the outcomes of translation relevant to its constituency of users. In practice, engagement faces numerous challenges and is often time-consuming, expensive and ‘thorny’ work. We explore the epistemic and ontological considerations and implications of four common critiques of engagement methodologies that contest: representativeness, communication and articulation, impacts and outcome, and democracy. The ECOUTER methodology addresses problems of representation and epistemic foundationalism using a methodology that asks, “How could it be otherwise?” ECOUTER affords the possibility of engagement where spatial and temporal constraints are present, relying on saturation as a method of ‘keeping open’ the possible considerations that might emerge and including reflexive use of qualitative analytic methods. This paper describes the ECOUTER process, focusing on one worked example and detailing lessons learned from four other pilots. ECOUTER uses mind-mapping techniques to ‘open up’ engagement, iteratively and organically. ECOUTER aims to balance the breadth, accessibility and user-determination of the scope of engagement. An ECOUTER exercise comprises four stages: engagement and knowledge exchange; analysis of mindmap contributions; development of a conceptual schema ; and feedback, refinement and development of recommendations. ECOUTER refuses fixed truths but also refuses a fixed nature. Its promise lies in its flexibility, adaptability and openness. ECOUTER will be formed and re-formed by the needs and creativity of those who use it. (shrink)

Early on in the development of Practicing Healthcare Ethicists Exploring Professionalization (PHEEP), the founding members recognized the need to address and meet two important goals: (1) the creation of a dynamic, rigorous process to support the exploratory work, and (2) the establishment of the means—deliberative engagement—to generate and justify the substantive content of professionalization-related products, such as practice standards and position statements. Drawing from social justice and deliberative democracy conceptions and insights (among others), the authors identify and describe the core (...) elements of the “process scaffolding” and “deliberative means” that inform PHEEP’s deliberative engagement methodology. The paper demonstrates how these process and substantive features have been meaningfully instantiated in the decision making framework established by PHEEP for its use in the development of professionalization-related products by Canadian practicing healthcare ethicists. (shrink)

Conley and colleagues (2023) conduct a fascinating analysis of how influential organizations in the global governance of human genome editing debate conceptualize and perform public engagement. Whi...