Patient and public involvement (PPI) has gained widespread support in health research and health policy circles, but there is little consensus on the precise meaning or justifications of PPI. We argue that an important step towards clarifying the meaning and justification for PPI is to split apart the familiar acronym and draw a distinction between patient and public involvement. Specifically, we argue that patient involvement should refer to the practice of involving individuals in health research (...) or policy on the basis of their experience with a particular condition, while public involvement should refer to the practice of involving individuals in health policy or research based on their status as members of a relevant population. Analyzing cases from the UK, Australia, and the USA, we show how our proposed distinction can deliver much needed clarity to conversations on PPI, while guiding the development and evaluation of future PPI‐based policies. (shrink)

Population-level biomedical research offers new opportunities to improve population health, but also raises new challenges to traditional systems of research governance and ethical oversight. Partly in response to these challenges, various models of public involvement in research are being introduced. Yet, the ways in which public involvement should meet governance challenges are not well understood. We conducted a qualitative study with 36 experts and stakeholders using the World Café method to identify key governance challenges and explore (...) how public involvement can meet these challenges. This brief report discusses four cross-cutting themes from the study: the need to move beyond individual consent; issues in benefit and data sharing; the challenge of delineating and understanding publics; and the goal of clarifying justifications for public involvement. The report aims to provide a starting point for making sense of the relationship between public involvement and the governance of population-level biomedical research, showing connections, potential solutions and issues arising at their intersection. We suggest that, in population-level biomedical research, there is a pressing need for a shift away from conventional governance frameworks focused on the individual and towards a focus on collectives, as well as to foreground ethical issues around social justice and develop ways to address cultural diversity, value pluralism and competing stakeholder interests. There are many unresolved questions around how this shift could be realised, but these unresolved questions should form the basis for developing justificatory accounts and frameworks for suitable collective models of public involvement in population-level biomedical research governance. (shrink)

The literature on patient public involvement and engagement (PPIE) in health research has grown significantly in the last decade, with a diverse range of definitions and topologies promulgated. This has led to disputes over what the central functions and purpose of PPIE in health research is, and this in turn makes it difficult to assess and evaluate PPIE in practice. This paper argues that the most important function of PPIE is the attempt to make health research more democratic. (...) Bringing this function to the fore and locating PPIE in the wider context of changes in contemporary forms of democratic engagement provides greater conceptual clarity over what PPIE in research should be trying to achieve. Conceptualizing PPIE as a form of democratization has a number of benefits. First, theories of what are appropriate, normatively justifiable and workable criteria for PPIE practices can be developed, and this can provide tools to address the legitimacy and accountability questions that have troubled the PPIE community. Second, this work can be used to form the basis of a research agenda to investigate how PPIE in health research operates, and how it can facilitate and/or improve democratic processes in health research. (shrink)

This paper examines the role of the general public in informing technology policy, observing that public involvement often occurs only through the electoral process or via feedback after plans have been implemented. Planners and policymakers are not necessarily in touch with the feelings and desires of the public who will be affected by their decisions. For this reason it is important to seek a clearer understanding of the views of citizens who are not typically involved in (...) the planning or design process in order to guide the evolution of technology, as well as to highlight areas where there may be some discrepancy between planners and the needs of everyday users. To broaden the inputs into discussion of emerging problems related to pervasive computing in the State of Hawaii, both information and communication technology specialists and members of the general population were invited to participate in a multi-phase study. Differences in perception between specialists and the general public were identified in all phases of research. Specialists were identified as being more focused on near-term issues related to barriers affecting the growth of high-technology industries within the State. Non-specialists showed greater concern for "human" issues, including issues related to the control of technology. Importantly, both groups independently described a need for increased public participation in the process of technological development. Analysis also revealed that both groups found the problem statements generated by non-specialists to be valuable contributions, arguing for their inclusion in the process of problem identification and further supporting the use of participatory planning methods. (shrink)

Biomedical research funding bodies across Europe and North America increasingly encourage—and, in some cases, require—investigators to involve members of the public in funded research. Yet there remains a striking lack of clarity about what ‘good’ or ‘successful’ public involvement looks like. In an effort to provide guidance to investigators and research organisations, representatives of several key research funding bodies in the UK recently came together to develop the National Standards for Public Involvement in Research. The (...) Standards have critical implications for the future of biomedical research in the UK and in other countries as researchers and funders abroad look to the Standards as a model for their own policy development. We assess the Standards and find that despite offering useful suggestions for dealing with practical challenges associated with public involvement, the Standards fail to address fundamental questions about when, why and with whom public involvement should be undertaken in the first place. We show that presented without this justificatory context, many of the recommendations in the Standards are, at best, fragments that require substantial elaboration by those looking to apply the Standards in their own work and, at worst, subject to potentially harmful misapplication by well-meaning investigators. As funding bodies increasingly push for public involvement in research, the key lesson of our analysis is that future recommendations about how public involvement should be conducted cannot be coherently formulated without a clear sense of the underlying goals and rationales for public involvement. (shrink)

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This paper analyzes a European research project called ‘Deepening Ethical Engagement and Participation in Emerging Nanotechnologies’ with the abbreviation DEEPEN. The DEEPEN’s findings and conclusions on the narratives, public understandings and the lay ethics of nanotechnologies are examined in a critical manner. Through a criticism of the theoretical framings of what constitutes a narrative and the application of a different theoretical framing of narratives, the paper argues that the findings and conclusion of the DEEPEN should be approached with caution (...) as there are several unjustified claims concerning the contextualization of the findings. Such claims pertain to the theoretical framing of narratives, virtue ethics, modernity, lay attitudes, and earlier research. (shrink)

The involvement of the public in the governance of genomics has become a topic of growing interest among scholars, practitioners and policy-makers. The implementation of public involvement programmes may be quite expensive, and the design and evaluation of public participation is a matter of controversy. Thus, this paper examines the justifications for public participation in the governance of genomic research to help understand whether public involvement is worthwhile and to provide a guide (...) to the design of public participation. I identify four primary justifications in support of public involvement. I argue that three of them have serious flaws: neither an increase in the stability of institutions, nor the positive effects on the virtues of individuals, nor the epistemic merits of participatory activities provide a solid ground for the engagement of the public in the governance of genomics. However, the ideal of legitimacy in the exercise of coercive power appears to lend strong support to public involvement programmes. Given that the reasons why public involvement is sought shape the design of the participatory activities, restricting the range of valid justifications promises to simplify the task of designing and evaluating public involvement. (shrink)

BackgroundPublic involvement activities are promoted as measures for ensuring good governance in challenging fields, such as biomedical research and innovation. Proponents of public involvement activities include individual researchers as well as non-governmental and governmental organizations. However, the concept of ‘public’ in public involvement deserves more attention by researchers because it is not purely theoretical: it has important practical functions in the guidance, evaluation and translation of public involvement activities.DiscussionThis article focuses on collective (...) agency as one property a public as a small group of participants in a public involvement activity could exhibit. It introduces a prominent theoretical approach to collective agents as one specific kind of social entities and demonstrates how this approach can be applied to current practice in public involvement activities. A brief discussion of different types of representation as they are used in the existing literature on this topic is also included because representation and collective agency can be closely related to each other. Suggestions and ideas that are derived from this reasoning include the proposal to use a ‘validity check’ for the generation of collective agents as a regular element of certain types of public involvement activities, the consequences of combining collective agency and representativeness as a further property a public could exhibit, and standards for reporting the content of public involvement activities in scientific publications.SummaryThis article discusses the importance of the concept of ‘public’ in public involvement activities, with a focus on biomedical research and innovation. It introduces various practically relevant ideas that are based on a theoretical analysis of collective agency as an important property a public can possess. (shrink)

Scientific modelling is a value-laden process: the decisions involved can seldom be made using ‘scientific’ criteria alone, but rather draw on social and ethical values. In this paper, we draw on a body of philosophical literature to analyze a COVID-19 vaccination model, presenting a case study of social and ethical value judgments in health-oriented modelling. This case study urges us to make value judgments in health-oriented models explicit and interpretable by non-experts and to invite public involvement in making (...) them. (shrink)

Many research institutions and funders have recently stated their commitment to actively support and promote ‘Equality, Diversity and Inclusion’ (EDI) in various aspects of health research including Patient and Public Involvement (PPI). However, translating this commitment into specific research projects presents significant challenges that existing approaches, practical guidelines and initiatives have not adequately addressed. In this paper, we explore how the lack of clear justifications for the EDI commitment in existing guidelines inadvertently complicates the work of those involved (...) with PPI and we stress the need for conceptual clarity for any EDI effort to yield meaningful results. Our focus centres on the first principle of the EDI discourse, ‘equality’, particularly in the form of ‘equality of opportunity’ as outlined in current guidance provided by the National Institute of Health Research in the United Kingdom. We examine challenges related to justifying and implementing a general, unspecified commitment to equality of opportunity and explain that this reflects a lack of consensus regarding the moral value of PPI in research – a profound problem that remains unaddressed. We then discuss how the presence of several opposing moral perspectives on PPI, makes determining the most appropriate way of addressing barriers to involvement complex and controversial, raising ethical implications for the work of health researchers, PPI specialists and coordinators. Finally we make suggestions on how future research can enrich the concept of ‘equality of opportunity’ in PPI and improve practice. While our primary focus is on the NIHR, a strong advocate of PPI in research, this analysis will point to normative and ethical considerations that may be relevant to other research institutions and funding organisations aiming to promote equality of opportunity in their public and patient involvement strategies. (shrink)

Some theorists—including Elizabeth Anderson, Gerald Gaus, and Amartya Sen—endorse versions of 'public reason' as the appropriate way to justify political decisions while rejecting 'ideal theory'. This chapter proposes that these ideas are not easily separated. The idea of public reason expresses a form of mutual 'civic' respect for citizens. Public reason justifications for political proposals are addressed to citizens who would find acceptable those justifications, and consequently would comply freely with those proposals should they become law. Hence (...) public reasoning involves 'local ideal theorizing': the justification of political proposals includes their consideration and evaluation under conditions of compliance with them by the citizens to whom those justifications are addressed. Local ideal theorizing, moreover, can lead to 'full ideal theorizing', wherein citizens outline and evaluate an amended version of their society’s 'basic structure'. This argument is illustrated by some recent empirical work on inequality within the United States. (shrink)

In this article, I argue that the material and rhetorical connection between “parental involvement” and motherhood has the effect of making two important features of parental involvement disappear. Both of these features need to be taken into account to think through the positive and negative effects of parental involvement in public schooling. First, parental involvement is labor. In the following section of this paper, I discuss the work of feminist scholars who have brought this to (...) light. Second, parental involvement remains one of the most significant ways in which citizens participate in the public sphere. While education reform projects centered on parental involvement do show some recognition that what parents/mothers do is in fact work, even as they ignore the gendered dimensions of this work and sunnily demand that parents do ever more of it, these projects resist the recognition that parents’/mothers’ involvement is also political. (shrink)

Key to concerns about public involvement in technology governance is the concept of lay expertise, the idea that lay people possess some kind of special knowledge that neither trained experts in technology, ethics and social sciences nor professional politicians possess. There are at least four different meanings of "lay expert": (1) Lay people who are educated into quasi-experts on a particular issue or technology; (2) Lay people who turn themselves into experts in order to challenge scientific experts; (3) (...) Lay people with particular knowledge based on tradition and experience; (4) Lay people who represent an alternative perspective to expert views because they are non-experts. The challenge is that lay people are often ignorant in the relevant matters and wish to leave governance to experts. Still, there are normative reasons for lay engagement, either as stakeholders or as citizens in a deliberative democracy. According to the second approach, political decisions should be based on an inclusive open debate aimed at the better argument, providing lay people a crucial role in governance. In order to include lay people without making them hostage to experts, politicians or interest groups, we can engage them in focus group interviews which are analysed by social scientists and included in the interdisciplinary debate in journals and political forums. (shrink)

This editorial introduces a revised set of publication requirements for papers, submitted to Homeopathy, that involve animal experimentation. Journals that publish studies involving animal experimentation have a major role to play in the maintenance of ethical standards because researchers are reliant upon them for publication of their findings. With an increasing global trend towards greater transparency and accountability in animal experimentation, many academic journals, such as the British Journal of Pharmacology, 1 and 2 are taking action to improve reporting standards. (...) In recognition of this need, members of Homeopathy's Editorial Board have been working together to examine the scientific rationale and the most relevant ethical guidelines for the use of animals in research. In addition, they have examined existing published studies in homeopathy research and current practice within the broad domain of medical research. Each of these aspects has informed the revised publication policy, whose overarching objectives are to maximise the ethical standards and scientific quality of animal research in homeopathy, and thereby ultimately to avoid any unnecessary suffering of animals used in such research. The following description details the background that was considered, the rationale for this development, and the steps that will be taken. (shrink)

When should nudging be deemed as permissible and when should it be deemed as intrusive to individuals’ freedom of choice? Should all types of nudges be judged the same? To date the debate concerning these issues has largely proceeded without much input from the general public. The main objective of this study is to elicit public views on the use of nudges in policy. In particular we investigate attitudes toward two broad categories of nudges that we label pro-self (...) and pro-social nudges. In addition we explore how individual differences in thinking and feeling influence attitudes toward nudges. General population samples in Sweden and the United States were presented with vignettes describing nudge-policies and rated acceptability and intrusiveness on freedom of choice. To test for individual differences, measures on cultural cognition and analytical thinking were included. Results show that the level of acceptance toward nudge-policies was generally high in both countries, but were slightly higher among Swedes than Americans. Somewhat paradoxically a majority of the respondents also perceived the presented nudge-policies as intrusive to freedom of choice. Nudge-polices classified as pro-social had a significantly lower acceptance rate compared to pro-self nudges. Individuals with a more individualistic worldview were less likely to perceive nudges as acceptable, while individuals more prone to analytical thinking were less likely to perceive nudges as intrusive to freedom of choice. To conclude, our findings suggest that the notion of “one-nudge- fits-all” is not tenable. Recognizing this is an important aspect both for successfully implementing nudges as well as nuancing nudge theory. (shrink)

This paper makes a conceptual inquiry into the notion of ‘publics’, and forwards an understanding of this notion that allows more responsible forms of decision-making with regards to technologies that have localized impacts, such as wind parks, hydrogen stations or flood barriers. The outcome of this inquiry is that the acceptability of a decision is to be assessed by a plurality of ‘publics’, including that of a local community. Even though a plurality of ‘publics’ might create competing normative demands, its (...) acknowledgment is necessary to withstand the monopolization of the process of technology appraisal. The paper presents four ways in which such an appropriation of publicness takes place. The creation of dedicated ‘local publics’, in contrast, helps to overcome these problems and allows for more responsible forms of decision-making. We describe ‘local publics’ as those in which stakeholders from the different publics that are related to the process of technology implementation are brought together, and in which concerns and issues from these publics are deliberated upon. The paper will present eight conditions for increasing the effectiveness of such ‘local publics’. (shrink)

Public pressure is essential for providing multinational enterprises (MNEs) with motivation to follow the standards of human rights conduct set in soft-law instruments, such as the United Nations Guiding Principles on Business and Human Rights. But how does the public judge MNE involvement in human rights violations? We empirically answer this question drawing on an original survey of American adults. We asked respondents to judge over 12,000 randomly generated scenarios in which MNEs may be considered to have (...) been involved in human rights violations. Our findings reveal substantial gaps between public judgments and the standards set in soft law and the normative literature. We identify the attributes of episodes of human rights violations involving MNEs that influence public judgments, including the relationship between the MNE and the perpetrator, the practice of due diligence, and the type of abuse. These results provide insights as to when we might expect public pressure to drive MNE compliance with soft-law instruments, and they direct attention to specific standards that will likely require stronger, ‘hard’ law approaches or broader efforts to shift the public’s view. (shrink)

Participatory methods aim to address controversy over new technologies through public consultation. This paper first describes the emergence of participatory methods within the framework of technology assessment, then provides an overview of the landscape of participatory arrangements; and, finally, discusses participatory methods in relation to different democratic ideals. The article challenges the widespread assumption that participatory methods can function as normatively neutral tools, which can readily be employed in various social and political settings. Through a case study of consensus (...) conferences on GMOs in three European countries, the article investigates the interpretive processes that take place when participatory procedures are applied in new national political settings. (shrink)

In their contribution, Wiggins and Wilbanks (2019) discuss the rise of citizen science and elaborate on several ethical issues that go beyond standard approaches in research ethics. They rightly sa...

Over the past three decades, two separate federal regulatory structures have emerged, each seeking to assure separate aspects of the integrity and ethics of research conducted using federal funding. One set of regulations is described in the Public Health Service Policies on Research Misconduct and relates to research misconduct, defined as consisting of fabrication of data or results, falsification of data and results, or plagiarism, in accordance with the federal‐wide definition adopted by the Office of Science and Technology Policy. (...) The second set of regulations, set forth in the Department of Health and Human Services regulations on the protection of human subjects (known as the “Common Rule”), prescribes a set of ethical and procedural protections for research involving human subjects.These two sets of research regulations are distinguished from each other by having different foci of enforcement, priorities of protection, oversight officials, oversight procedures, seizure of evidence, standards of proof, expectations of privacy, and appeal procedures for researchers who are subject to adverse findings and penalties. These differences are significant and fundamental. They complicate the process of compliance for institutions and researchers, who are expected to adhere to both sets of standards for the same federally funded research activities in research with human subjects. Compliance is especially complicated when suspected violations of both sets of standards must be investigated and resolved concurrently. This document represents an effort to provide institutions and individuals with practical suggestions as they try to comply with both sets of regulations. (shrink)

There are a number of important links and similarities between public health and safety. In this extended essay, Gregg D. Caruso defends and expands his public health-quarantine model, which is a non-retributive alternative for addressing criminal behavior that draws on the public health framework and prioritizes prevention and social justice. In developing his account, he explores the relationship between public health and safety, focusing on how social inequalities and systemic injustices affect health outcomes and crime rates, (...) how poverty affects brain development, how offenders often have pre-existing medical conditions (especially mental health issues), how involvement in the criminal justice system itself can lead to or worsen health and cognitive problems, how treatment and rehabilitation methods can best be employed to reduce recidivism and reintegrate offenders back into society, and how a public health approach could be successfully applied within the criminal justice system. Caruso's approach draws on research from the health sciences, social sciences, public policy, law, psychiatry, medical ethics, neuroscience, and philosophy, and he delivers a set of ethically defensible and practically workable proposals for implementing the public health-quarantine model. The essay begins by discussing recent empirical findings in psychology, neuroscience, and the social sciences that provide us with an increased understanding of the social and neurological determinants of health and criminal behavior. It then turns to Caruso's public health-quarantine model and argues that the model provides the most justified, humane, and effective approach for addressing criminal behavior. Caruso concludes by proposing a capability approach to social justice grounded in six key features of human well-being. He argues that we cannot successfully address concerns over public health and safety without simultaneously addressing issues of social justice—including the social determinants of health (SDH) and the social determinants of criminal behavior (SDCB)—and he recommends eight general policy proposals consistent with his model. (shrink)

This essay argues that publicity is a necessary precondition for both politics and philosophy. Against the backdrop of the traditional dismissal of publicity as a leveling of difference, the author develops Foucault’s positive use of publicity in the Prisons Information Group as a technique of differentiation. The essay therefore proceeds in four parts: 1) it contextualizes the Prisons Information Group within Foucault’s life and work, 2) it identifies four specific modes of publicity utilized by the group, 3) it argues that, (...) through these modes, Foucault embraces classically troublesome elements of publicity (like noise, superficiality, and anonymity) as expressly transformative, and 4) it develops a consequently positive account of Foucauldian leveling. The essay concludes that publicity involves the collective transmigration of thought, word, and deed requisite to both the political and philosophical life. (shrink)

This collection of case studies in public management bridges the gap between mainstream CSR - confined to the for-profit corporations - and the vast bodies of workers and organizations that make up government and its public administration. The variety and discretion of managerial endeavours in public management calls for accountability and responsibility of government beyond current legal instruments: The book argues that CSR must be brought to bear with government. In government in fact, knowledge management is not (...) a linear process, but the result of working with passion of the parts, implying discretionary behaviour and creativity which in turn imply choice and responsibility. Cases ranging from the USA to Central America, New Zealand and Europe all confirm the complex nature of public management, entailing partnership synergy for disaster recovery, the intertwined link between management and new technology and mindfulness at individual level. The cases are set in a framework by theoretical essays on bureaucratic behaviour and unknown stakeholders. Public-sector management has long drawn upon principles, tools, and techniques developed in the private sector, aiming to infuse bureaucracies with touches of efficiency and productivity. But good governance is also central to good management. This fascinating, wide-ranging volume shows how ideas from the Corporate Social Responsibility movement apply to the governance and administration of public agencies. A series of detailed and informative case studies, written by researchers and practitioners with deep knowledge of their industries and agencies, explores the challenges of managing public and government agencies in a socially responsible manner. The book offers a nuanced and balanced portrait that calls for greater public involvement and oversight in keeping public organizations on track. Highly recommended! Peter G. Klein University of Missouri Norwegian School of Economics and Mises Institute Here are six compelling case studies that reveal the relevance, even the imperative, of Corporate Social Responsibility (CSR) in the public sector. In doing so, the authors simultaneously expand the role of CSR and provide us with a refreshed concept of government and public management. The authors then lay the theoretical groundwork for their observations in ways that enrich our understanding of both CSR and the evolving roles of government in our lives. This is "must reading" for corporate officers and for public managers. Thomas R. Sexton Stony Brook University, NY College of Business and School of Professional Development. (shrink)

There is a growing call for greater public involvement in establishing science and technology policy, in line with democratic ideals. A variety of public participation procedures exist that aim to consult and involve the public, ranging from the public hearing to the consensus conference. Unfortunately, a general lack of empirical consideration of the quality of these methods arises from confusion as to the appropriate benchmarks for evaluation. Given that the quality of the output of any (...) participation exercise is difficult to determine, the authors suggest the need to consider which aspects of the process are desirable and then to measure the presence or quality of these process aspects. To this end, a number of theoretical evaluation criteria that are essential for effective public participation are specified. These comprise two types: acceptance criteria, which concern features of a method that make it acceptable to the wider public, and process criteria, which concern features of the process that are liable to ensure that it takes place in an effective manner. Future research needs to develop instruments to measure these criteria more precisely and identify the contextual and environmental factors that will mediate the effectiveness of the different participation methods. (shrink)

"Public Bioethics collects the most influential essays and articles of James F. Childress, a leading figure in the field of contemporary bioethics. These essays, including new, previously unpublished material, cohere around the idea of "public bioethics," which involves analyzing and assessing public policies in biomedicine, health care, and public health, often through public deliberative bodies. The volume is divided into four sections. The first concentrates on the principle of respect for autonomy and paternalistic policies and (...) practices. The second explores the tension among bioethics, public policy, and religious convictions. It pays particular attention to the role of religious convictions in the formation of public policies and to the basis and limits of exemptions of health care providers who conscientiously oppose providing certain legal and patient-sought services. The third section looks at practices and policies related to organ transplantation. Childress focuses particularly on determining death, obtaining first-person consent for deceased organ donation, and allocating donated organs effectively and fairly. The book's fourth and final section maps the broad terrain of public health ethics, proposes a triage framework for the use of resources in public health crises, addresses public health interventions that potentially infringe civil liberties, and sheds light on John Stuart Mill's misunderstood legacy for public health ethics."--Provided by publisher. (shrink)

‘Client involvement’ has been a mantra within health policies, education curricula and healthcare institutions over many years, yet very little is known about how ‘client involvement’ is practised in home‐care services. The aim of this article is to analyse ‘client involvement’ in practise seen from the positions of healthcare professionals, an elderly person and his relative in a home‐care setting. A sociologically inspired single case study was conducted, consisting of three weeks of observations and interviews. The study (...) has a focus on the relational aspects of home care and the structural, political and administrative frames that rule home‐ care practice. Client involvement is shown within four constructed analytical categories: ‘Structural conditions of providing and receiving home care’; ‘Client involvement inside the home: performing a professional task and living an everyday life’; ‘Client involvement outside the home: liberal business and mutual goal setting’; and ‘Converting a home to a working place: refurnishing a life’. The meaning of involvement is depending on which position it is viewed from. On the basis of this analysis, we raise the question of the extent to which involvement of the client in public home‐care practice remains limited. (shrink)

In France a difference has been established between cultural popularization and cultural democracy. The former is aimed at spreading works of art in as large a way as possible; the latter emphasizes the participation of the public. From there, we argue that moving from cultural popularization towards cultural democracy can lead to a shift in responsibilities from professionals towards the general public. With reference to the theoretical background of reception, appropriation and participation, we lead a participant observation on (...) three different fields in order to understand what facilitates and what constrains this shift. This leads us to stress the importance of developing an adequate organizational framework. (shrink)

In France a difference has been established between cultural popularization and cultural democracy. The former is aimed at spreading works of art in as large a way as possible; the latter emphasizes the participation of the public. From there, we argue that moving from cultural popularization towards cultural democracy can lead to a shift in responsibilities from professionals towards the general public. With reference to the theoretical background of reception, appropriation and participation, we lead a participant observation on (...) three different fields in order to understand what facilitates and what constrains this shift. This leads us to stress the importance of developing an adequate organizational framework. (shrink)

Public insurance is commonly assimilated with redistributive tools mobilized by the welfare state in the pursuit of an egalitarian ideal. This view contains some truth, since the result of insurance, at a given moment, is the redistribution of resources from the lucky to unlucky. However, Joseph Heath considers that the principle of efficiency provides a better normative explanation and justification of public insurance than the egalitarian account. According to this view, the fact that the state is involved in (...) the provision of specific insurance is explained and justified by the greater efficiency of the state, in comparison with markets, in addressing market failures such as moral hazard or adverse selection. Our argument is that while insurance, intrinsically and idealistically, may diverge from a redistributive scheme, it is nevertheless difficult to deny that insurance has nothing to do with equality. More precisely, we argue that insurance may be understood as an egalitarian tool if our understanding of equality is broadened to include relational equality. Our paper aims to briefly recap the debates surrounding public insurance as a redistributive tool, advancing the idea that public insurance may be a relational egalitarian tool. It then presents a number of relational arguments in favor of the involvement of the state in the provision of specific forms of insurance, arguments that have been overlooked given the domination of luck egalitarian approaches in these debates. (shrink)

Mark S. Cladis pinpoints the origins of contemporary notions of the public and private and their relationship to religion in the work of Jean-Jacques Rousseau. His thesis cuts across many fields and issues-philosophy of religion, women's studies, democratic theory, modern European history, American culture, social justice, privacy laws, and notions of solitude and community-and wholly reconsiders the political, cultural, and legal nature of modernity in relation to religion. Turning to Rousseau's Garden, its inhabitants, the Solitaires, and the question of (...) restoration and redemption that preoccupied much of Rousseau's thought, Cladis examines how Rousseau addressed the tension between the joys and moral obligations of social engagement and the desire for solitude. He was caught between two possibilities: active involvement in the creation of an enlightened and humane society or extrication from social entanglements in favor of cultivating a spiritual interior life. Yet Rousseau did not view this conflict as a desperate division. Rather, for him it was a moral struggle to be endured by those who had fallen from the Garden. For this edition Cladis has added a substantive introduction that discusses the role of religion in contemporary democratic societies, particularly in American public life. Cladis proposes four models of thinking about religion in public and champions what he calls spiritual democracy-a dynamic, culturally specific, and progressive democracy. Cladis argues that spiritual democracy refers not only to a society's legal codes and principles but also to its democratic culture and symbols and its daily practices and institutions. It encompasses the nation's character, diverse identities, and a distinctivel exchange between the nation's public vision and citizens' complex, private lives. (shrink)

Public sector institutions are increasingly investing resources in data collection and data analytics to provide better public services at lower cost, to anticipate demand for services, to identify high-risk groups, and to develop targeted interventions. Prior research has shown that the media shape understanding of the possibilities of technology and creates related expectations. In this article we explore how artificial intelligence and emerging data-driven technologies are made familiar and by whose voices they are talked about in the media. (...) Empirically, we explore communication materials and media coverage from the joint AI experiment between the City of Espoo and Tieto Corporation in 2017–18. In this experiment, Tieto Corporation combined customer data from the City of Espoo’s social and health care and early childhood education from 2002–2016 and analysed this data using artificial intelligence methods. Theoretically, we draw on the tradition of the social construction of technology and especially its branch that focuses on the domestication of technologies. The results show that the means of narration used by the media – repetition and highlighting the voice of the representatives of the institutional actors involved in the AI experiment – strengthen the agency and interests of the parties involved as well as their visibility in the media, while reducing the space for possible critical discussion. We argue that this way, AI is made familiar and acceptable to citizens and in public services in Finland. (shrink)

Public reasoning is widely thought to be essential to democracy, but there is much disagreement about whether such deliberation should be constrained by a principle of public reason, which may seem to conflict with important democratic values. This paper denies that there is such a conflict, and argues that the distinctive contribution of public reason is to constitute a relationship of civic friendship in a diverse society. Acceptance of public reason would not work against mutual understanding, (...) learning, or compromise, nor does the principle involve any violation of political equality. The real threat to democracy is not public reason, but the framing of public reason by a presumption against state action. (shrink)

COVID19 pandemic has clarified that public health policies are central for the future of human societies from several perspectives. As a matter of fact, they are based on certain premises that are practical-political (e.g., ensuring the health of citizens), moral (e.g., health is a value), or epistemological (e.g., certain ideas concerning expertise and shared knowledge). Indeed, effective policies require first and foremost not only to be based on reliable data and models (i.e., so-called evidence-based policy) but also to ensure (...) that these policies are democratically accepted, shared (e.g., considering both cognitive and social dimensions), and hopefully formed after a deliberative process involving experts from various fields alongside citizens. (shrink)

Many UK public companies invest considerable resources in charitable donations and community involvement. Using semi‐structured interviews with public company officers, the author sought to investigate the motivations behind this activity. Was it undertaken because of an expectation of commercial benefit, out of a sense of obligation, or for other reasons? It appeared that public companies were increasingly anxious to make connections between corporate activity in the community and business activities. Public companies linked with local communities (...) clearly felt a sense of connection with them. Corporate officers were constantly dealing with the management of reputation, which was seen as a valuable business asset, and community links made this task easier. (shrink)

What makes science trustworthy to the public? This chapter examines one proposed answer: the trustworthiness of science is based at least in part on its independence from the idiosyncratic values, interests, and ideas of individual scientists. That is, science is trustworthy to the extent that following the scientific process would result in the same conclusions, regardless of the particular scientists involved. We analyze this "idiosyncrasy-free ideal" for science by looking at philosophical debates about inductive risk, focusing on two recent (...) proposals which offer different methods of avoiding idiosyncrasy: the high epistemic standards proposal and the democratic values proposal. (shrink)

I will argue that the natural law theory of morality, when extended into a political theory of justice, results in a picture of political justice much like that of public reason liberalism. However, natural law political theory, I argue, need not entail a natural law theory of morality. While facts about what societies ought to do supervene upon facts about what is good for human beings, there are distinct goods involved and distinct reasons for action. Rather, considerations taken from (...) the common good as guiding public policy results in a two-layer approach to public reasonability, resembling features of both consensus and convergence accounts of public reason. Consequently, the differences between natural law and classical public reason liberalism are significant but are not as significant as might have otherwise appeared. In fact, natural law political theory might be a more consistent development of the idea of a public reason than those of classical liberalism. (shrink)

In Rawls’s political liberalism, legitimate exercises of political power must be publicly justifiable to reasonable citizens on grounds each can coherently accept, where citizens count as “reasonable” only if they can accept certain values of public culture. Other citizens have no say in public justification, or no equal say. For Rawls, then, legitimate political power must accord with a subset of cultural values, and can be legitimate even if it is not (equally) justifiable to people who cannot accept (...) them. Does this mean that Rawls permits that such people be dominated? What kind of domination, if any, would this involve, and would it involve “cultural” domination? This chapter takes its lead from these questions. It offers a reading of the role of public justification in political liberalism that foregrounds differences in the discursive standing of reasonable and unreasonable people, and interpret these differences in domination-theoretic terms. I suggest that there is reason to believe that Rawls’s view would subject the unreasonable–a mixed group that also includes respectable people–to forms of discursive and political domination, and this in a manner that attracts the worry that cultural domination is involved. (shrink)

The proliferation of public–private partnerships for development as an answer to many public challenges calls for careful evaluation. To this end, tailored frameworks are fundamental for helping understand the PPPs’ impact and for guiding corrective adjustment. Scholars have developed frameworks focusing on the partners’ relationships, the order of effects, and the distinction between outputs and outcomes. To capture a PPP’s complexity and multiple linkages with its environment, we argue that a thorough evaluation should adopt a stakeholder-oriented approach and (...) consider the costs and benefits that a PPP implies for them—especially as taxpayers’ money is involved. For this purpose, we build on a stakeholder-oriented evaluation framework from the nonprofit business partnership literature. In line with our broad evaluation conception, we extend it with the manifold ripple effects that PPPs for development have and include the time dimension for the links between different PPP stages and related outcomes to become clearer. Applying this framework to an illustrative case, we highlight important direct and especially indirect stakeholder outcomes, which a narrow evaluation would omit, point to the challenges involved in the evaluation endeavor, and identify interesting future research areas. (shrink)

The idea of public reason involves a standard of legitimacy that requires that laws and institutions be acceptable to all reasonable people, regardless of their conceptions of the good. Many philosophers have argued that public reason should be understood as an answer to the question of how to justify state coercion. However, some authors have criticized this traditional account because it overlooks noncoercive state actions that seem appropriate topics of public reason. More recently, some philosophers have defended (...) the traditional account against that objection. In this paper, I argue that these approaches cannot effectively deal with that objection and offer a different version of the traditional account that can do so. This version rests on the ideas of overlapping consensus and stability. According to this version, the point of public reason is preserving an overlapping consensus on a coercive system of laws and institutions and achieving a stable society. (shrink)

Public values failure occurs when the market and the public sector fail to provide goods and services required to achieve the core values of society such as equity (Bozeman 2007). That public policy for emerging health technologies should address intrinsic societal values such as equity is not a novel concept. However, the ways that the public values discourse of stakeholders is structured is less clear and rarely studied through the lens of public interests. This is (...) especially true in the health sciences discourse. Using the public value mapping (PVM) model I present a case study of the intrinsic value of equity in nanomedicine for cancer and the imperatives for translational research, an instrumental value to achieve equity. After reviewing and coding nearly 700 value statements from several hundred public documents, I find that that the discourse on values varies between documents that address basic research and documents that address the application of the knowledge produced in basic research, with some especially notable disconnections. This paper demonstrates the importance of further refinement of methods for testing the PVM framework if the societal goal is to improve consistency of the public value discussion by those involved in developing and applying new technologies. The paper also demonstrates the value of a PVM approach for complex science policy analysis, especially for emerging technologies like nanomedicine. (shrink)

Public collective hunger strikes take place in complex social and political contexts, require medical attention and present ethical challenges to physicians. Empirical research, the ethical debate to date and existing guidelines by the World Medical Association focus almost exclusively on hunger strikes in detention. However, the public space differs substantially with regard to the conditions for the provision of health care and the diverse groups of healthcare providers or stakeholders involved. By reviewing empirical research on the experience of (...) health professionals with public collective hunger strikes, we identified the following ethical challenges: (1) establishment of a trustful physician–striker relationship, (2) balancing of medico‐ethical principles in medical decision‐making, (3) handling of loyalty conflicts and (4) preservation of professional independence and the risk of political instrumentalization. Some of these challenges have already been described and discussed, yet not contextualized for public collective strikes, while others are novel. The presence of voluntary physicians may offer opportunities for a trustful relationship and, hence, for ethical treatment decisions. According to our findings, it requires more attention to how to realise autonomous medical decisions in the complex context of a dynamic, often unstructured and politically charged setting, which ethical norms should shape the professional role of voluntary physicians, and what is the influence of the hunger strikers' collective on individual healthcare decisions. Our article can serve as a starting point for further ethical discussion. It can also provide the basis for the development of potential guidelines to support health professionals involved in public collective hunger strikes. (shrink)