Public deliberation on health gain measures.

Researchers and decision-makers use health gain measures to assess the value of health interventions. However, our current understanding of how these measures are understandable and accessible to the community is limited. This study examined a diverse group of stakeholders' attitudes and preferences for 9 commonly used health gain measures. We recruited 20 stakeholders, including patients, caregivers, pharmacists, allied health professionals, and citizens. We conducted 2 in-person deliberative meetings in which participants learned, discussed, deliberated on, and ranked 9 health gain measures. The final ranking conducted after unified deliberation showed the quality-adjusted life year (QALY) as the top-ranked measure, followed by the clinical benefit rating method used by the U.S. Preventive Services Task Force, and multicriteria decision analysis (MCDA). We identified 3 themes during deliberations: the importance of using patient values in population-based health gain measures, examining complementary measures together, and choosing measures that are intuitive and easy to understand. Future policymaking should consider incorporating the QALY, clinical benefit rating, and MCDA into prioritization decisions.

Having a real say: findings from first nations community panels on pandemic influenza vaccine distribution.

BACKGROUND: Recent deliberations by Australian public health researchers and practitioners produced an ethical framework of how decisions should be made to distribute pandemic influenza vaccine. The outcome of the deliberations was that the population should be considered in two categories, Level 1 and Level 2, with Level 1 groups being offered access to the pandemic influenza vaccine before other groups. However, the public health researchers and practitioners recognised the importance of making space for public opinion and sought to understand citizens values and preferences, especially First Nations peoples. METHODS: We conducted First Nations Community Panels in two Australian locations in 2019 to assess First Nations people's informed views through a deliberative process on pandemic influenza vaccination distribution strategies. Panels were asked to make decisions on priority levels, coverage and vaccine doses. RESULTS: Two panels were conducted with eighteen First Nations participants from a range of ages who were purposively recruited through local community networks. Panels heard presentations from public health experts, cross-examined expert presenters and deliberated on the issues. Both panels agreed that First Nations peoples be assigned Level 1 priority, be offered pandemic influenza vaccination before other groups, and be offered two doses of vaccine. Reasons for this decision included First Nations people's lives, culture and families are important; are at-risk of severe health outcomes; and experience barriers and challenges to accessing safe, quality and culturally appropriate healthcare. We found that communication strategies, utilising and upskilling the First Nations health workforce, and targeted vaccination strategies are important elements in pandemic preparedness and response with First Nations peoples. CONCLUSIONS: First Nations Community Panels supported prioritising First Nations peoples for pandemic influenza vaccination distribution and offering greater protection by using a two-dose full course to fewer people if there are initial supply limitations, instead of one dose to more people, during the initial phase of the vaccine roll out. The methodology and findings can help inform efforts in planning for future pandemic vaccination strategies for First Nations peoples in Australia.

Assessing Facilitator Fidelity to Principles of Public Deliberation: Tutorial.

Public deliberation, or deliberative democracy, is a method used to elicit informed perspectives and justifiable solutions to ethically fraught or contentious issues that affect multiple stakeholder groups with conflicting interests. Deliberative events bring together stakeholders (deliberants) who are provided with empirical evidence on the central issue or concern and then asked to discuss the evidence, consider the issue from a societal perspective, and collectively work toward a justifiable resolution. There is increasing interest in this method, which warrants clear guidance for evaluating the quality of its use in research. Most of the existing literature on measuring deliberation quality emphasizes the quality of deliberants' inputs (eg, engagement and evidence of compromise) during deliberative sessions. Fewer researchers have framed quality in terms of facilitator inputs, and these researchers tend to examine inputs that are consistent with generic group processes. The theory, process, and purpose of public deliberation, however, are distinct from those of focus groups or other group-based discussions and warrant a mechanism for measuring quality in terms of facilitator fidelity to the principles and processes of deliberative democracy. In our public deliberation on ethical conflicts in minor consent for biomedical HIV prevention research, we assessed facilitator fidelity to these principles and processes because we believe that such assessments serve as a component of a comprehensive evaluation of overall deliberation quality. We examined verbatim facilitator remarks in the deliberation transcripts and determined whether they aligned with the 6 principles of public deliberation: equal participation, respect for the opinions of others, adoption of a societal perspective, reasoned justification of ideas, expression of diverse opinions, and compromise or movement toward consensus. In this tutorial, we describe the development of a blueprint to guide researchers in assessing facilitator fidelity, share 3 templates that will assist them in the task, and describe the results of our assessment of facilitator fidelity in 1 of the 4 sites in which we conducted deliberations.

Public perceptions and expectations: Disentangling the hope and hype of organoid research.

Organoid technologies are rapidly advancing and hold great potential and hope for disease modeling and clinical translational research. Still, they raise a number of complex, ethical questions regarding their current and future use. Patient and public involvement is important in building public trust and helping to secure responsible conduct and valued innovations; nevertheless, research into patient and public perspectives on organoid technologies remains scarce. We report on a first public dialogue on organoid technologies through three cross-country deliberative workshops with a diverse group of stakeholders to identify their perceptions and concerns. Participants generally support organoid technologies on the condition that responsible governance, ethical oversight, and sound informed consent procedures are in place. Yet, a broad set of potential concerns are identified, primarily concerning commercialization, healthcare access, and cerebral organoids. Participants' insights and recommendations can help inform researchers and ethics and policy bodies toward supporting responsible and ethical organoid approaches.

Eliciting preferences and respecting values: Why ask?

This essay explores the pitfalls and ambiguities in relying on preference elicitation to value health states, and it distinguishes preference elicitation, as a fallible method of measuring well-being, from public consultation, as an element of public deliberation. After distinguishing preference elicitation as a method of ascertaining opinions from preference elicitation as a method of measuring well-being, it points out that preferences depend on beliefs and the considerations speaking in favor of deferring to people's values do not carry over to deferring to their beliefs. Instead of valuing health states by their bearing on well-being, as measured by preferences, this essay argues for valuing health states by their bearing on activity limitations and suffering, as determined by public deliberation.

Policy Preferences Regarding Health Data Sharing Among Patients With Cancer: Public Deliberations.

BACKGROUND: Precision health offers the promise of advancing clinical care in data-driven, evidence-based, and personalized ways. However, complex data sharing infrastructures, for-profit (commercial) and nonprofit partnerships, and systems for data governance have been created with little attention to the values, expectations, and preferences of patients about how they want to be engaged in the sharing and use of their health information. We solicited patient opinions about institutional policy options using public deliberation methods to address this gap. OBJECTIVE: We aimed to understand the policy preferences of current and former patients with cancer regarding the sharing of health information collected in the contexts of health information exchange and commercial partnerships and to identify the values invoked and perceived risks and benefits of health data sharing considered by the participants when formulating their policy preferences. METHODS: We conducted 2 public deliberations, including predeliberation and postdeliberation surveys, with patients who had a current or former cancer diagnosis (n=61). Following informational presentations, the participants engaged in facilitated small-group deliberations to discuss and rank policy preferences related to health information sharing, such as the use of a patient portal, email or SMS text messaging, signage in health care settings, opting out of commercial data sharing, payment, and preservation of the status quo. The participants ranked their policy preferences individually, as small groups by mutual agreement, and then again individually in the postdeliberation survey. RESULTS: After deliberation, the patient portal was ranked as the most preferred policy choice. The participants ranked no change in status quo as the least preferred policy option by a wide margin. Throughout the study, the participants expressed concerns about transparency and awareness, convenience, and accessibility of information about health data sharing. Concerns about the status quo centered around a lack of transparency, awareness, and control. Specifically, the patients were not aware of how, when, or why their data were being used and wanted more transparency in these regards as well as greater control and autonomy around the use of their health data. The deliberations suggested that patient portals would be a good place to provide additional information about data sharing practices but that over time, notifications should be tailored to patient preferences. CONCLUSIONS: Our study suggests the need for increased disclosure of health information sharing practices. Describing health data sharing practices through patient portals or other mechanisms personalized to patient preferences would minimize the concerns expressed by patients about the extent of data sharing that occurs without their knowledge. Future research and policies should identify ways to increase patient control over health data sharing without reducing the societal benefits of data sharing.

Quantifying public preferences for healthcare priorities in Taiwan through an integrated citizens jury and discrete choice experiment.

Priority setting is a critical process for national healthcare systems that need to allocate limited resources across unlimited healthcare demands. In recent decades, health policymakers have identified the need to combine technical dimensions of priority setting with political dimensions relating to community values. A range of methods for engaging the public in priority setting has been developed, yet there is no consensus around the most effective methodology. A 2014 paper proposed the integration of two methods currently used for soliciting public preferences around health care services: i) an individual survey instrument, Discrete Choice Experiments (DCEs) and ii) Citizen Juries (CJs), a group-based model that incorporates education and deliberative dialogue. This pilot study is among the first to empirically test this integrated method to assess its value across two domains: does the CJ process alter participant preferences and are the consensus values of the CJ captured by the individualistic DCE? The two-part, mixed methods study was administered in Taipei, Taiwan in August of 2016. Twenty-seven participants completed a DCE as a baseline pre-test, ranking a set of attributes in terms of importance for future resource allocation under Taiwan's National Health Insurance System. Twenty of the participants next took part in the integrated CJ-DCE method, which consisted of education and facilitated dialogue through a CJ, followed by retaking the DCE survey. Participant preferences changed after undergoing the CJ process and these new, group-based preferences were reflected in the second DCE, meaning participants did not revert to their original individualistic preferences. The results of this study demonstrate that the integrated CJ-DCE method adds value in allowing an ethically communitarian set of values to be developed and captured via an individualistic methodology. Further testing is needed to investigate the reliability of our findings and how it may be implemented to maximize public acceptance.

Are we ready for the revision of the 14-day rule? Implications from Chinese legislations guiding human embryo and embryoid research.

The ISSCR recently released new guidelines that relaxed the 14-day rule taking away the tough barrier, and this has rekindled relevant ethical controversies and posed a fresh set of challenges to each nation's legislations and policies directly or indirectly. To understand its broad implications and the variation and impact of China's relevant national policies, we reviewed and evaluated Chinese laws, administrative regulations, departmental rules, and normative documents on fundamental and preclinical research involving human embryos from 1985 to 2022 in this paper. We have historically examined whether these regulations, including a 14-day rule, had restrictions on human embryo research, and whether and how these policies affected human embryo and embryoid research in China. We also discussed and assessed the backdrop in which China has endeavored to handle such as the need for expanding debates among justice practice, academia, and the public, and the shifting external environment influenced by fast-developing science and technology and people's culture and religions. In general, Chinese society commonly opposes giving embryos or fetuses the legal status of humans, presumably due to the Chinese public not seeming to have any strong religious beliefs regarding the embryo. On this basis, they do not strongly oppose the potential expansion of the 14-day rule. After the guidelines to strengthen governance over ethics in science, and technology were released by the Chinese government in 2022, Chinese policymakers have incorporated bioethics into the national strategic goals using a "People-Centered" approach to develop and promote an ecological civilization. Specifically, China follows the "precautionary principle" based on ethical priority as it believes that if scientific research carries any potential technological and moral risks on which no social ethical consensus has been attained, there would be a need to impose oversight for prevention and precaution. At the same time, China has adopted a hybrid legislative model of legislation and ethical regulations with criminal, civil and administrative sanctions and a 14-day limit specified within its national hESCs guidelines. This would certainly be a useful example for other countries to use when considering the possibility of developing a comprehensive, credible and sustainable regulatory framework.

Public Deliberation Process on Patient Perspectives on Health Information Sharing: Evaluative Descriptive Study.

BACKGROUND: Precision oncology is one of the fastest-developing domains of personalized medicine and is one of many data-intensive fields. Policy for health information sharing that is informed by patient perspectives can help organizations align practice with patient preferences and expectations, but many patients are largely unaware of the complexities of how and why clinical health information is shared. OBJECTIVE: This paper evaluates the process of public deliberation as an approach to understanding the values and preferences of current and former patients with cancer regarding the use and sharing of health information collected in the context of precision oncology. METHODS: We conducted public deliberations with patients who had a current or former cancer diagnosis. A total of 61 participants attended 1 of 2 deliberative sessions (session 1, n=28; session 2, n=33). Study team experts led two educational plenary sessions, and trained study team members then facilitated discussions with small groups of participants. Participants completed pre- and postdeliberation surveys measuring knowledge, attitudes, and beliefs about precision oncology and data sharing. Following informational sessions, participants discussed, ranked, and deliberated two policy-related scenarios in small groups and in a plenary session. In the analysis, we evaluate our process of developing the deliberative sessions, the knowledge gained by participants during the process, and the extent to which participants reasoned with complex information to identify policy preferences. RESULTS: The deliberation process was rated highly by participants. Participants felt they were listened to by their group facilitator, that their opinions were respected by their group, and that the process that led to the group's decision was fair. Participants demonstrated improved knowledge of health data sharing policies between pre- and postdeliberation surveys, especially regarding the roles of physicians and health departments in health information sharing. Qualitative analysis of reasoning revealed that participants recognized complexity, made compromises, and engaged with trade-offs, considering both individual and societal perspectives related to health data sharing. CONCLUSIONS: The deliberative approach can be valuable for soliciting the input of informed patients on complex issues such as health information sharing policy. Participants in our two public deliberations demonstrated that giving patients information about a complex topic like health data sharing and the opportunity to reason with others and discuss the information can help garner important insights into policy preferences and concerns. Data on public preferences, along with the rationale for information sharing, can help inform policy-making processes. Increasing transparency and patient engagement is critical to ensuring that data-driven health care respects patient autonomy and honors patient values and expectations.

Integrating Citizens Juries and Discrete Choice Experiments: Methodological issues in the measurement of public values in healthcare priority setting.

All health systems struggle with unlimited needs for healthcare, yet limited resources with which to address them. Under national health insurance systems, policymakers must make explicit and potentially contested decisions around resource allocation. Policymakers have recognized the need to include public values in decisions regarding the distribution of resources across competing health priorities. Given the complex nature of these decisions, however, research into how to effectively measure public preferences is underdeveloped. Measuring community values poses special challenges since they involve normative judgments that can be interpreted differently across individuals and communities. Researchers have previously proposed integrating two methods that are currently used for measuring public preferences around healthcare services: i) an individual survey instrument, the Discrete Choice Experiment (DCE) and ii) a group-based model that incorporates informed opinions and deliberative dialogue, Citizen Juries (CJs). This current paper proposes a framework for implementing that integration and assesses methodological issues in the integration of DCEs and CJs, including issues of generalizability and validity. CJs and DCEs have conflicting epistemological and methodological foundations, which impact how researchers might analyze results of the integrated method. Researchers and policymakers interested in measuring social values should determine the philosophical orientation of their research question prior to study design, which will assist in choosing an appropriate research method. Further research is needed to investigate the empirical validity of the integrated method and how it may be implemented to maximize public acceptance. Advancing these methods can provide an improved instrument for capturing public preferences for policymakers tasked with priority setting in diverse contexts.

Deliberating Upon the Living Wage to Alleviate In-Work Poverty: A Rhetorical Inquiry Into Key Stakeholder Accounts.

Most developed nations have a statutory minimum wage set at levels insufficient to alleviate poverty. Increased calls for a living wage have generated considerable public controversy. This article draws on 25 interviews and four focus groups with employers, low-pay industry representatives, representatives of chambers of commerce, pay consultants, and unions. The core focus is on how participants use prominent narrative tropes for the living wage and against the living wage to argue their respective perspectives. We also document how both affirmative and negative tropes are often combined by participants to craft their own rhetorical positions on the issue.

Precision medicine research with American Indian and Alaska Native communities: Results of a deliberative engagement with tribal leaders.

PURPOSE: Amid calls for greater diversity in precision medicine research, the perspectives of Indigenous people have been underexplored. Our goals were to understand tribal leaders' views regarding the potential benefits and risks of such research, explore its priority for their communities, and identify the policies and safeguards they consider essential. This article reports on the participants' perspectives regarding governance and policy, stewardship and sharing of information and biospecimens, and informed consent. METHODS: After informal local dialogs with 21 tribal leaders, we convened a 2.5-day deliberation with tribal leaders (N = 10) in Anchorage, Alaska, in June 2019 using a combination of small group and plenary discussion, ranking, and voting exercises to explore the perspectives on precision medicine research. RESULTS: Tribal sovereignty was central to participants' ideas about precision medicine research. Although views were generally positive, provided that the appropriate controls were in place, some kinds of research were deemed unacceptable, and the collection of certain biospecimens was rejected by some participants. Differences were observed regarding the acceptability of broad consent. CONCLUSION: Tribal leaders in this study were generally supportive of precision medicine research, with the caveat that tribal oversight is essential for the establishment of research repositories and the conduct of research involving Indigenous participants.

Should Digital Contact Tracing Technologies be used to Control COVID-19? Perspectives from an Australian Public Deliberation.

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.

The Dutch Citizen Forum on Public Reimbursement of Healthcare: A Qualitative Analysis of Opinion Change.

BACKGROUND: A deliberative Citizen Forum 'Choices in healthcare' was held in the Netherlands to obtain insight into the criteria informed citizens would propose for the public reimbursement of healthcare. During 3 weekends, 24 citizens participated in evidence-informed deliberation on the basis of 8 case studies. The aim of this study was to assess how the opinions of 8 participants in the deliberative Citizens Forum changed and if so, why participants themselves believe their opinions have changed, whether participation influenced their perceived reasonableness of other participants in the forum and whether it influenced their opinions about involvement of citizens in decision-making. METHODS: Semi-structured interviews were held with 8 participants before and after their participation in the Citizen Forum. Using the method of reconstructing interpretive frames opinions about the public reimbursement of healthcare were reconstructed. RESULTS: Participants' opinions changed over time; they became more aware of the complexity of decision-making and came to accept that there are limits to the available resources and accept cost as a criterion for reimbursement decisionmaking. Participants report that exchanging arguments and personal experiences with other participants made them change their initial opinions. Participants ascribed increases in the perceived reasonableness of other participants' opinions to feelings of group-bonding and becoming more familiar with each other's personal circumstances. Participants further believe that citizens represent an additional opinion to that of other stakeholders and believe their opinions should be considered in relation to those of other stakeholders, given they are provided with opportunities for critical discussion. CONCLUSION: Organized deliberation should allow for the exchange of arguments and the sharing of personal experiences which is linked to learning. On the one hand this is reflected in the uptake of new arguments and on the other hand in the revision, specification or expansion of personal argumentation. Providing opportunities for critical deliberation is key to prevent citizens from adhering to initial emotional reactions that remain unchallenged and which may no longer be supported after deliberation.

Restructuring Deliberation Using a Cultural Theory Lens.

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.

Narratives in Public Deliberation: Empowering Gene Editing Debate with Storytelling.

Gene editing in the environment must consider uncertainty about potential benefits and risks for different populations and under different conditions. There are disagreements about the weight and balance of harms and benefits. Deliberative and community-led approaches offer the opportunity to engage and empower diverse publics to co-create responses and solutions to controversial policy choices in a manner that is inclusive of diverse perspectives. Stories, understood as situated accounts that reflect a person's life experiences, can enable the articulation of nuanced perspectives, diversify how perspectives are communicated, encourage wider participation, open dominant perspectives to challenge, and invite participants to assess appropriate empathy and precaution in collective positions. An emphasis on storytelling in deliberations on gene editing of organisms emphasizes carefully designed recruitment and facilitation to support hearing from a range of perspectives, including those that present a different set of assumptions than those that may be held by experts or other stakeholders, among these, consideration of how to understand our relationships to nature.

Genetic Control in Historical Perspective: The Legacy of India's Genetic Control of Mosquitoes Unit.

In the early 1970s, a World Health Organization-initiated and United States-funded project released lab-reared mosquitoes outside New Delhi in the first large-scale field trials of the genetic control of mosquitoes. Despite partnering with the Indian Council of Medical Research and investing significantly in outreach to local communities at the release sites, the project was embroiled in controversy and became an object of vehement debate within the Indian parliament and diplomatic contretemps between the United States and India. This early episode of genetic control research demonstrates how a scientific collaboration was entangled in geopolitics and shaped by the legacy of colonialism. This historical case study has implications for public deliberation in the present, pointing to the challenges of shared decision-making in the context of structural inequality, the way that a backdrop of military interest in a technology can impede trust, and the long-term consequences of projects that foster mistrust.

Public Deliberation about Gene Editing in the Wild.

Genetic editing technologies have long been used to modify domesticated nonhuman animals and plants. Recently, attention and funding have also been directed toward projects for modifying nonhuman organisms in the shared environment-that is, in the "wild." Interest in gene editing nonhuman organisms for wild release is motivated by a variety of goals, and such releases hold the possibility of significant, potentially transformative benefit. The technologies also pose risks and are often surrounded by a high uncertainty. Given the stakes, scientists and advisory bodies have called for public engagement in the science, ethics, and governance of gene editing research in nonhuman organisms. Most calls for public engagement lack details about how to design a broad public deliberation, including questions about participation, how to structure the conversations, how to report on the content, and how to link the deliberations to policy. We summarize the key design elements that can improve broad public deliberations about gene editing in the wild.

Envisioning Complex Futures: Collective Narratives and Reasoning in Deliberations over Gene Editing in the Wild.

The development of technologies for gene editing in the wild has the potential to generate tremendous benefit, but also raises important concerns. Using some form of public deliberation to inform decisions about the use of these technologies is appealing, but public deliberation about them will tend to fall back on various forms of heuristics to account for limited personal experience with these technologies. Deliberations are likely to involve narrative reasoning-or reasoning embedded within stories. These are used to help people discuss risks, processes, and fears that are otherwise difficult to convey. In this article, we identify three forms of collective narrative that are particularly relevant to debates about modifying genes in the wild. Our purpose is not to privilege any particular narrative, but to encourage people involved in deliberations to make these narratives transparent. Doing so can help guard against the way some narratives-referred to here as "crafted narratives"-may be manipulated by powerful elites and concentrated economic interests for their own strategic ends.

Does Gene Editing in the Wild Require Broad Public Deliberation?

How strong is the argument for requiring public deliberation by very large publics-at national or even global levels-before moving forward with efforts to use gene editing on wild populations of plants or animals? Should there be a general moratorium on any such efforts until such broad public deliberation has been successfully carried out? This article works toward recommendations about the need for and general framing of broad public deliberation. It finds that broad public deliberation is highly desirable but not flatly necessary before moving forward with any local cases of gene editing in the wild. It also finds that broad public deliberation would be most helpful in generating very general guidance and is unlikely to be appropriate for specific cases. Broad public deliberation is most helpful for cases that involve higher levels of uncertainty and moral ambiguity, but separating out a distinct class of cases for deliberation is not yet possible.