Mobile phone-based applications (apps) can promote faster targeted actions to control COVID-19. However, digital contact tracing systems raise concerns about data security, system effectiveness, and their potential to normalise privacy-invasive surveillance technologies. In the absence of mandates, public uptake depends on the acceptability and perceived legitimacy of using technologies that log interactions between individuals to build public health capacity. We report on six online deliberative workshops convened in New South Wales to consider the appropriateness of using the COVIDSafe app to (...) enhance Australian contact tracing systems. All groups took the position (by majority) that the protections enacted in the app design and supporting legislation were appropriate. This support is contingent on several system attributes including: the voluntariness of the COVIDSafe app; that the system relies on proximity rather than location tracking; and, that data access is restricted to local public health practitioners undertaking contact tracing. Despite sustained scepticism in media coverage, there was an underlying willingness to trust Australian governing institutions such that in principle acceptance of the new contact tracing technology was easy to obtain. However, tensions between the need to prove system effectiveness through operational transparency and requirements for privacy protections could be limiting public uptake. Our study shows that informed citizens are willing to trade their privacy for common goods such as COVID-19 suppression. But low case numbers and cautionary public discourses can make trustworthiness difficult to establish because some will only do so when it can be demonstrated that the benefits justify the costs to individuals. (shrink)

Solidarity means standing with others: expressing support in times of stress and working together toward shared goals. As Saunkeah and colleagues note, solidarity also incorp...

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)

BackgroundPatients not attending their appointments without giving notice burden healthcare services. To reduce non-attendance rates, patient non-attendance fees have been introduced in various settings. Although some argue in narrow economic terms that behavioural change as a result of financial incentives is a voluntary transaction, charging patients for non-attendance remains controversial. This paper aims to investigate the controversies of implementing patient non-attendance fees.ObjectiveThe aim was to map out the arguments in the Norwegian public debate concerning the introduction and use of patient (...) non-attendance fees at public outpatient clinics.MethodsPublic consultation documents (2009–2021) were thematically analysed (n=84). We used a preconceived conceptual framework based on the works of Grant to guide the analysis.ResultsA broad range of arguments for and against patient non-attendance fees were identified, here referring to the acceptability of the fees’ purpose, the voluntariness of the responses, the effects on the individual character and institutional norms and the perceived fairness and comparative effectiveness of patient non-attendance fees. Whereas the aim of motivating patients to keep their appointments to avoid poor utilisation of resources and increased waiting times was widely supported, principled and practical arguments against patient non-attendance fees were raised.ConclusionA narrow economic understanding of incentives cannot capture the breadth of arguments for and against patient non-attendance fees. Policy makers may draw on this insight when implementing similar incentive schemes. The study may also contribute to the general debate on ethics and incentives. (shrink)

Designing broad public deliberation is challenging. In addition, participants of public deliberation are guided by their cultural norms, values, and rules. This creates a tension between the goal of practical approaches to broad public deliberation and how individuals perceive issues and relate to others in the world. Despite such challenges, we must continue to create opportunities for the public to deliberate about and provide input into the regulation of emerging technologies. Therefore, previously imagined approaches to broad public deliberation should be (...) reevaluated to better utilize the information gained during the process and expand the range of ideas incorporated into decision‐making. To do this, institutions must consider how the public makes sense of complex issues concerning cultural conflict. This article introduces a framework that demonstrates how cultural theory can be used for rethinking previous approaches to public deliberation. In doing so, it offers guidelines for designing public deliberation involving distinct public participation venues based on different worldviews. (shrink)

Residents’ councils in Quebec’s residential and long-term care centres have the mandate to promote the improvement of living conditions for residents, to assess their level of satisfaction, and to defend their rights. Based on two studies on the autonomy of councils, we examined how committees can express themselves on topics other than those the management is already aware of, to reveal various previously unknown aspects of the services, and to voice unexpressed concerns. We are especially interested in what makes management (...) receptive, or not, to what the committee members say. The councils’ ability to express them selves is, in fact, inseparable from its capacity to listen to the management teams, and we seek to determine the conditions required to perform this dual capacity. (shrink)

Emerging parallel to long-standing, academic and policy inquiries on personal responsibility for health is the empirical assessment of lay persons’ views. Yet, previous studies rarely explored personal responsibility for health among lay persons as dynamic societal values. We sought to explore lay persons’ views on personal responsibility for health using the Fairness Dialogues, a method for lay persons to deliberate equity issues in health and health care through a small group dialogue using a hypothetical scenario. We conducted two 2-h Fairness (...) Dialogues sessions (n = 15 in total) in Nova Scotia, Canada. We analyzed data using thematic analysis. Our analysis showed that personal choice played an important role in participants’ thinking about health. Underlying the concept of personal choice was considerations of freedom and societal debt. In participants’ minds, personal and social responsibilities co-existed and they were unwilling to determine health care priority based on personal responsibility. The Fairness Dialogues is a promising deliberative method to explore lay persons’ views as dynamic values to be developed through group dialogues as opposed to static, already-formed values waiting to be elicited. (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)

Background This paper describes the design, implementation, and process outcomes from three public deliberations held in three tribal communities. Although increasingly used around the globe to address collective challenges, our study is among the first to adapt public deliberation for use with exclusively Indigenous populations. In question was how to design deliberations for tribal communities and whether this adapted model would achieve key deliberative goals and be well received.Methods We adapted democratic deliberation, an approach to stakeholder engagement, for use with (...) three tribal communities to respect tribal values and customs. Public deliberation convenes people from diverse backgrounds in reasoned reflection and dialogue in search of collective solutions. The deliberation planning process and design were informed by frameworks of enclave deliberation and community-based participatory research, which share key egalitarian values. The deliberations were collaboratively designed with tribal leadership and extensive partner input and involvement in the deliberations. Each deliberation posed different, locally relevant questions about genomic research, but used the same deliberation structure and measures to gauge the quality and experience of deliberation.Results A total of 52 individuals participated in the deliberations across all three sites. Deliberants were balanced in gender, spanned decades in age, and were diverse in educational attainment and exposure to health research. Overall, the deliberations were positively evaluated. Participant perceptions and external observer datasets depict three deliberations that offered intensive conversation experiences in which participants learned from one another, reported feeling respected and connected to one another, and endorsed this intensive form of engagement.Conclusion The adapted deliberations achieved key deliberative goals and were generally well received. Limitations of the study are described. (shrink)

Citizen science is touted as a means of making science more inclusive and democratic. However, when citizens are drawn from societies with significant socioeconomic and racial disparities, citizen...

A majority opinion seems to have emerged in scholarly analysis of the assortment of technologies that have been given the label “synthetic biology.” According to this view, society should allow the technology to proceed and even provide it some financial support, while monitor­ing its progress and attempting to ensure that the development leads to good outcomes. The near‐consensus is captured by the U.S. Presidential Commission for the Study of Bioethical Issues in its report New Directions: The Ethics of Synthetic Biology (...) and Emerging Technologies, which arguably marked the end of a preliminary round of analysis about the ethical and policy questions raised by synthetic bi­ology. Like a number of other, earlier documents issued by various groups around the world, the re­port called attention to questions about how the technology will be used; whether it might be mis­used; what sorts of accidents might happen along the way; the economic, environmental, and social impacts of the eventual applications; whether the very idea of “synthetic biology” should be trou­bling; and how the debate over all of these ques­tions will be conducted. Also like most similar documents, however, while it called for careful monitoring and oversight of technology, it did not recommend any significant new constraints on its development and use. The commission's stance was that it would be “imprudent either to declare a moratorium on synthetic biology until all risks can be determined and mitigated, or to simply ‘let science rip,’ regardless of the likely risks.”In this report, we will take stock of the current consensus, comment on some of the major points of disagreement, and identify the next steps for the debate. In part I, we offer a brief overview of the research and applications commonly grouped together under the heading of synthetic biology, partly in order to set the stage for the rest of the discussion and partly because we want to highlight some conceptual problems that attend the very la­bel given this field. In parts II, III, and IV, we take up, respectively, three broad classes of concerns that arise in the context of synthetic biology: con­cerns about the intrinsic or inherent value of do­ing synthetic biology, concerns about the concrete harms and benefits of doing synthetic biology, and concerns about justice. Addressing these concerns requires a method for bringing the public's values to bear on policy‐making concerning emerging biotechnologies; in part V, we discuss the chal­lenges in developing such a method. (shrink)