In this article, we extend the research on the public interest to non-audit engagements performed by accounting firms and public accountants. Our thesis is that non-audit engagements, as private goods, require a distinct approach to the public interest than auditing. We suggest that a public value perspective can be used conceptually to provide substantial criteria for designing non-audit engagements conducive to public value creation and greater accountability. We illustrate the applicability and consequences of a (...) class='Hi'>public value perspective by analyzing and contrasting the decision of two judicial opinions deciding whether Deloitte and the lead partner of a consulting engagement failed to act in the public interest in engineering the sale of collapsed British carmaker MG Rover. We advocate for a significant change in ethical codes of conduct by defining public interest obligations, not only in terms of professional attributes, but also in terms of outcomes. Our approach also suggests a requirement regarding planning a non-audit engagement, including establishing a public value proposition detailing the planned nature of the engagement, and extent of the assessment of the intended public value creation. We discuss the aspirational function of codes of conduct to provide accountability other than in terms of technical output, and to maintain the legitimacy and purpose of the profession. (shrink)

This paper analyses the activities of five organizations shaping the debate over the global governance of genome editing in order to assess current approaches to public engagement (PE). We compare the recommendations of each group with its own practices. All recommend broad engagement with the general public, but their practices vary from expert-driven models dominated by scientists, experts, and civil society groups to citizen deliberation-driven models that feature bidirectional consultation with local citizens, as well as (...) hybrid models that combine elements of both approaches. Only one group practices PE that seeks community perspectives to advance equity. In most cases, PE does little more than record already well-known views held by the most vocal groups, and thus is unlikely to produce more just or equitable processes or policy outcomes. Our exploration of the strengths, weaknesses, and possibilities of current forms of PE suggests a need to rethink both “public” and “engagement.”. (shrink)

Imprecise definition of key terms in the “public participation” domain have hindered the conduct of good research and militated against the development and implementation of effective participation practices. In this article, we define key concepts in the domain: public communication, public consultation, and public participation. These concepts are differentiated according to the nature and flow of information between exercise sponsors and participants. According to such an information flow perspective, an exercise’s effectiveness may be ascertained by (...) the efficiency with which full, relevant information is elicited from all appropriate sources, transferred to all appropriate recipients, and combined to give an aggregate/consensual response. Key variables that may theoretically affect effectiveness—and on which engagement mechanisms differ—are identified and used to develop a typology of mechanisms. The resultant typology reveals four communication, six consultation, and four participation mechanism classes. Limitations to the typology are discussed, and future research needs identified. (shrink)

BackgroundThe potential contribution of community engagement to addressing ethical challenges for international biomedical research is well described, but there is relatively little documented experience of community engagement to inform its development in practice. This paper draws on experiences around community engagement and informed consent during a genetic cohort study in Kenya to contribute to understanding the strengths and challenges of community engagement in supporting ethical research practice, focusing on issues of communication, the role of field workers (...) in 'doing ethics' on the ground and the challenges of community consultation.MethodsThe findings are based on action research methods, including analysis of community engagement documentation and the observations of the authors closely involved in their development and implementation. Qualitative and quantitative content analysis has been used for documentation of staff meetings and trainings, a meeting with 24 community leaders, and 40 large public and 70 small community group meetings. Meeting minutes from a purposive sample of six community representative groups have been analysed using a thematic framework approach.ResultsField workers described challenges around misunderstandings about research, perceived pressure for recruitment and challenges in explaining the study. During consultation, leaders expressed support for the study and screening for sickle cell disease. In community meetings, there was a common interpretation of research as medical care. Concerns centred on unfamiliar procedures. After explanations of study procedures to leaders and community members, few questions were asked about export of samples or the archiving of samples for future research.ConclusionsCommunity engagement enabled researchers to take account of staff and community opinions and issues during the study and adapt messages and methods to address emerging ethical challenges. Field workers conducting informed consent faced complex issues and their understanding, attitudes and communication skills were key influences on ethical practice. Community consultation was a challenging concept to put into practice, illustrating the complexity of assessing information needs and levels of deliberation that are appropriate to a given study. (shrink)

This article poses the problem of public consultation on contested policies involving new technologies and competing values or value‐laden goals. It argues that Deliberative Polling, an approach developed by the author, can be usefully employed to engage representative samples to deliberate in depth in controlled experiments so as to yield a picture of the public's considered judgments. It also argues from recent experience that such consultations can be cost effectively conducted online with stratified random samples. It draws (...) on examples from various issue domains including climate and energy as well as prototype deliberations conducted on gene editing in the wild. It sets out criteria that Deliberative Polling, as well as other designs, should satisfy if policy recommendations based on the data generated by these public consultations are to be credible. (shrink)

Public engagement is one of the fundamental pillars of the European programme for research and innovation _Horizon 2020_. The programme encourages engagement that not only fosters science education and dissemination, but also promotes two-way dialogues between scientists and the public at various stages of research. Establishing such dialogues between different groups of societal actors is seen as crucial in order to attain epistemic as well as social desiderata at the intersection between science and society. However, whether (...) these dialogues can actually help attaining these desiderata is far from obvious. This paper discusses some of the costs, risks, and benefits of dialogical public engagement practices, and proposes a strategy to analyse these argumentative practices based on a three-tiered model of epistemic exchange. As a case study, we discuss the phenomenon of vaccine hesitancy, arguably a result of suboptimal public engagement, and show how the proposed model can shed new light on the problem. (shrink)

Undertaking engagement in public health research is ethically essential. There is a growing emphasis on practicing engagement as the co‐construction of knowledge, which goes beyond other common forms of engagement in health research practice: consulting and informing. Taking such an approach means researchers jointly construct knowledge with research users and beneficiaries; all parties design and conduct research together and share decision‐making power. This article makes the normative argument that such engagement is necessary to achieve the (...) foundational moral aims of public health research—building relations of equality and addressing the health needs of those considered disadvantaged—which reflect the field's underlying commitment to social justice. It next identifies and discusses three ways in which co‐constructing knowledge advances those moral aims: by facilitating self‐determination, supporting individuals’ right to research, and maximizing social knowledge to address cognitive and epistemic injustice. Objections to the arguments presented in the article are then articulated and defended against. (shrink)

The Australian moratorium on human clinical trials of xenotransplantation was lifted in December 2009. This decision follows public consultations on whether xenotransplantation should or should not proceed in Australia, which occurred in 2002 and 2004. However, the public consultation, in its design and process, did not facilitate meaningful public engagement and involvement, thus marginalising the public and devaluing their social experiences and diverse knowledges. This brief article questions what constitutes adequate public consultation, (...) and suggests that consensus conferences or citizen juries should be explored as a mechanism for meaningful public engagement for future public consultation exercises in Australia. (shrink)

The twentieth century has been described as the time of man’s discovery of himself; few have contributed more to this cause than Erik Erikson. _The Clinical Erik Erikson: A psychoanalytic method of engagement and activation_ highlights Erikson’s transforming contributions to the field of psychoanalysis and honors his legacy by providing unpublished clinical case illustrations of his actual psychotherapeutic work. The publication of case material—simple memorable fragments and clinical vignettes— brings the reader into Erikson’s consultation room, providing a portrait (...) of his clinical technique and demonstrating how he actually worked. Stephen Schlein, an authority on Erikson, presents an illuminating account of Erikson’s pioneering work through an exhaustive search of his early monographs on child psychoanalysis, clinical writings, psychotherapeutic case studies, and participation at case conferences at The Austen Riggs Center. Erikson’s writings reveal a psychoanalytic method of extraordinary richness that emphasizes essential ingredients of an interpersonal-relational clinical method and articulates interactional dimensions that have restorative potential. His vision focuses on the relationship, its powerful affects, and a belief that human beings have a potent capacity for real change. This book will be essential reading for psychoanalysts and psychoanalytic psychotherapists. (shrink)

Academic-researcher-led public engagement and consultation on new biotechnology provides information about new biotechnology to the public, and solicits their attitudes, beliefs and understanding about the technology. A burden associated with the democratic ideals of transparency and accountability encourages researchers to provide accurate information to the public. Less recognized is their role as actual, or perceived, authorities to provide new knowledge and to make policy or regulatory decisions. This paper focuses on the first of these two (...) – the conflation between expertise on the subject of the engagement and the authority to represent that subject in an engagement process. While expertise, or at least accuracy in portraying expert knowledge, is consistent with transparency and accountability, it is argued here that authority in the representation of expert knowledge may be inconsistent with the intent of public engagement and consultation. (shrink)

Academic-researcher-led public engagement and consultation on new biotechnology provides information about new biotechnology to the public, and solicits their attitudes, beliefs and understanding about the technology. A burden associated with the democratic ideals of transparency and accountability encourages researchers to provide accurate information to the public. Less recognized is their role as actual, or perceived, authorities to provide new knowledge and to make policy or regulatory decisions. This paper focuses on the first of these two (...) – the conflation between expertise on the subject of the engagement and the authority to represent that subject in an engagement process. While expertise, or at least accuracy in portraying expert knowledge, is consistent with transparency and accountability, it is argued here that authority in the representation of expert knowledge may be inconsistent with the intent of public engagement and consultation. (shrink)

This letter responds to the article “The Social Risks of Science,” by Jonathan Herington and Scott Tanona, published in the November‐December 2020 issue of the Hastings Center Report.

It is easy to call for public engagement (or dialogue) around difficult, morally fraught policy topics such as synthetic biology, but it is quite another thing to make sure that the deliberation is meaningful, as Kaebnick, Gusmano, and Murray aptly insist it should be. The surveys, focus groups, and public dialogues that have been held about synthetic biology to date show a very low level of public knowledge about it. Focus group findings also suggest that the (...) in­herent uncertainty and complexity surrounding synthetic biology give rise to greater ambivalence moving forward. The Science and Technology Innovation Program at the Woodrow Wilson International Center for Scholars and Hart Research Associates presented respondents with a “balanced description” of synthetic biology in nation­wide phone surveys and eight sessions of focus groups and found that, after respondents received information, the percentage saying that the risks outweighed the ben­efits consistently increased.In my view, the Hart research suggests three very im­portant conclusions about how best to structure public deliberation. First, information about uncertainty may not inform the public in any meaningful way. Second, the purpose of assessing public opinion and conduct­ing public deliberation is crucially important. Third, as Kaebnick, Gusmano, and Murray point out, the type and framing of the information given and the timing of the discussion matters a great deal for shaping the content. (shrink)

Healthcare ethics consultation is therefore one of the most consequential, institutionally accepted, and widespread forms of public philosophy in the United States. In this chapter, the authors begin with an overview of the development of healthcare ethics and its emergence as a concrete practice embedded in healthcare settings. They then describe the core ethical principles that inform the everyday practice of ethics consultations and the generally accepted steps involved in conducting a consultation. The authors discuss the role (...) of clinical ethicists in medical education and policy development. Finally, they conclude with some remarks on the distinctive contributions made by those with philosophical training to these endeavors and the importance of continued engagement by philosophers in this important public work. (shrink)

In a recent article, Carolyn Hendricks and Lyn Carson begin to remedy the deficit of literature on deliberative democracy consultancy, or the provision of deliberation goods and services for a fee, by observing that the competitive, entrepreneurial and business-driven nature of this growing deliberative industry might threaten those conditions for generating an open and participatory process of democratic governance. Building on their important contribution to the literature, the present paper provides a parallel assessment based on John Dewey's notions of (...) class='Hi'>public spirit and socialized intelligence. While the growth of the deliberative consultancy industry might appear dangerous to the prospects for an engaged citizenry and open government, the specter, I argue, is more apparent than real, the result of two implicit dualisms, one between citizens and experts and the other between the individual and the community. Some might claim that Dewey's critique of the epistemological industry also applies to the deliberation industry. However, this is not the case. Deliberative consultancy pertains to the business enterprise behind deliberative democracy, not the academic enterprise of producing knowledge about deliberative democracy. Dewey's notion of public spirit defuses the tension between citizen and expert, or deliberators and consultants, by understanding them as engaged in collaborative partnerships. Moreover, Dewey's idea of socialized intelligence reunites the individual and her community, or the deliberative entrepreneur and the larger community of inquirers. In this way, the threat, in Jon Elster's terminology, that the market poses to the forum does not manifest in the relationship between deliberative consultants and deliberating publics so long as a few ethical norms guide the practice of deliberative consultancy. (shrink)

Important scientific, ethical and sociological debates are emerging over the trans-humanist goal to achieve therapeutic treatments to ‘cure’ the debilitation of age-related illness and extend the healthy life span of individuals through interventive biogerontological research. The scientific and moral discourses surrounding this contentious scientific field are mapped out, followed by a normative argument favouring ‘strong’ deliberative democratic control of human life extension research. This proposal incorporates insights from constructive and participatory technology assessment, upstream public engagement and back-casting analysis; (...) to outline a programme of participatory approaches to encourage two-way dialogue between scientific and citizen perspectives, and foster the long-term deliberative democratic governance of this developing field. (shrink)

Some patients tolerate a given drug well, without adverse reactions. For others, though, an identical dose of the same medication can have toxic effects. Moreover, while a drug can be effective at relieving symptoms for some patients, it may fail to do the same for others suffering with the same disease. With such variability in treatment responses, tailoring medical interventions to individual patients has long been an aspiration of medicine. Until recently, however, medicine lacked a clear understanding of the biological (...) reasons for human variation in drug response. Attempting to adjust treatment to the individual patient, physicians have relied primarily on direct observation, trial-and-error, and, ultimately... (shrink)

The “Open Air Laboratories” (OPAL) is a large, England-wide environmental public engagement (PE) project based on the “citizen science” model. It is designed to involve people of all backgrounds and abilities in the production of environmental science and in the process to educate and raise awareness and enthusiasm about nature and its importance. This article draws on a series of interviews with scientists and science communicators involved in the project to explore their motivations and aims for the project (...) and what they see as the goals of public engagement generally. We find a varied and nuanced array of motivations and aims that interviewees cite for taking part in the project, pointing toward a reevaluation of traditional ways of understanding the value of public engagement, policy relevance, and dialogue within public engagement. Especially relevant in relation to thinking about the policy relevance of PE is our conclusion that there are many different ways of thinking about the value of PE, characterized in this article as “the neglected middle.”. (shrink)

In this paper, I take seriously calls for public engagement in human genome editing decision-making by endorsing the convening of a “Citizens Jury” in conjunction with the International Commission on the Clinical Use of Human Germline Genome Editing’s next summit scheduled for March 6–8, 2023. This institutional modification promises a more inclusive, deliberative, and impactful form of engagement than standard bioethics engagement opportunities, such as comment periods, by serving both normative and political purposes in the quest (...) to offer moral guidance on gene editing. In examining evidence from the Australian Citizens’ Jury on Genome Editing convened in 2021, I argue that Citizens’ Juries should work in tandem with governing institutions to preserve the role of expertise while ensuring that the diverse views of the public are incorporated into their final reports as well. First, early inclusivity allows “the people” to hold agenda setting power through helping to set resource priorities. This also makes a downstream deliberative event, such as the called for Global Citizens’ Assembly, both more likely to occur and more influential on policy. Second, Jury’s diverse composition promises substantive contributions to the Commission’s work. Third, Citizens’ Juries could help to cultivate the Commission’s trustworthiness. (shrink)

New Zealand and United Kingdom governments have set new directives for increased consultation with the public about health care. Set against a legacy of modest success with past engagement with public consultations, this paper considers potentially adverse ethical implications of the new directives. Drawing on experiences from New Zealand and the United Kingdom, and on an Orthodox Jewish perspective, the paper seeks to answer two questions: What conditions can compromise the ethics of public consultation? (...) How can the public respond ethically to consultation? In answering these questions, the paper considers how Orthodox Judaism, as a specific positive morality, can aid the development of public policy. It is suggested that an Orthodox Jewish perspective does not require limiting the content of public consultations and helps to define a common procedural morality binding Jews and non-Jews. This procedural morality requires avoiding two conditions that, as shown from Jewish texts, make public consultation unethical. These are overpreparation and underpreparation. Members of the public who deem a consultation unethical should give feedback not on the proposal but on the conditions they perceive to prevent the consulting party from considering their viewpoints on the proposal. (shrink)

The tension between the public and the private spheres is not new: while feminists have long called for public protection to be extended to the private sphere, liberals argue for the...

The ‘participatory turn’ in science and technology governance has resulted in the growth of initiatives designed to engage lay people in consultation and decision-making on controversial matters. Almost from the start there has been both enthusiasm and serious critique of these exercises, from scholars and activists. The gaps and challenges are well known. In this paper we indicate the limitations of deliberative mechanisms as regards how they cope with familiar forms of people’s engagement with a given matter. We (...) examine how this phenomenon unfolded at the Barcelona Citizen Conference on the Digitalization of Society; a participatory exercise inspired by the model of consensus conferences that took place in 2014 in Barcelona. Our perspective on the topic is inspired by Sociology of Engagements. Focusing on how participants and organizers deal with individual anecdotes, worries and testimonies reported during the conference, the analysis shows how these formats are ignored, externalized, banned and re-formed during deliberations. This phenomenon is seen as supporting a civic-liberal regime of engagement. (shrink)

Citizens today are increasingly expected to be knowledgeable about and prepared to engage with biomedical knowledge. In this article, I wish to reframe this ‘public understanding of science’ project, and place fresh emphasis on public understandings of research: an engagement with the everyday laboratory practices of biomedicine and its associated ethics, rather than with specific scientific facts. This is not based on an assumption that non-scientists are ‘ignorant’ and are thus unable to ‘appropriately’ use or debate science; (...) rather, it is underpinned by an empirically-grounded observation that some individuals may be unfamiliar with certain specificities of particular modes of research and ethical frameworks, and, as a consequence, have their autonomy compromised when invited to participate in biomedical investigations. Drawing on the perspectives of participants in my own sociological research on the social and ethical dimensions of neuroscience, I argue that public understanding of biomedical research and its ethics should be developed both at the community level and within the research moment itself in order to enhance autonomy and promote more socially robust science. Public bioethics will have to play a key role in such an endeavour, and indeed will contribute in important ways to the opening up of new spaces of symmetrical engagement between bioethicists, scientists and wider publics—and hence to the democratisation of the bioethical enterprise. (shrink)

This article analyzes the conditions for mobilizing the science base for development of public policy. It does so by focusing upon the science-policy interface, specifically the processes of direct interaction between scientists and scientifically trained experts, on the one hand, and agents of policymaking organizations, on the other. The article defines two dimensions – cognitive distance and expert autonomy – which are argued to influence knowledge exchange, in such a way as to shape the outcome. A case study on (...) the implementation of congestion charges in Stockholm, Sweden, illustrates how the proposed framework pinpoints three central issues for understanding these processes: Differentiating the roles of, e.g., a science-based consultancy firm and an academic environment in policy formation; Examining the fit between the organizational form of the science-policy interface and the intended goals; and Increasing our understanding of when policymaker agents themselves need to develop scientific competence in order to interact effectively with scientific experts. (shrink)

This introduction to the special issue on “Medicine, Health, and Publics” argues that a rhetorical understanding of publics offers conceptual, methodological, and practical benefits to health and medical humanities scholars.

Whilst public engagement in decisions concerning science and technology is widely extolled, research shows that the application of deliberative democratic theory remains – at least in Europe – highly constrained. Science and technology policy requires closer attention to the wider context of governance and the compatibility of public deliberation with established modes of policy-making.

This paper investigates the dynamic and performative construction of publics in public engagement exercises. In this investigation, we, on the one hand, analyse how public engagement settings as political machineries frame particular kinds of roles and identities for the participating publics in relation to ‘the public at large’. On the other hand, we study how the participating citizens appropriate, resist and transform these roles and identities, and how they construct themselves and the participating group in (...) relation to wider publics. The empirical basis of our argument is a discussion of four different kinds of participation events in Austria. Building on these observations we develop conclusions about the public up-take of public participation in technoscience and the role of public engagement in current techno-political cultures. (shrink)

We concur with Baum and colleagues (2009) on the importance of pandemic planners taking explicit steps to employ public engagement methodologies. Thus far, as Baum and colleagues note, there have b...

Pharmaceutical companies developed Covid-19 vaccines in record time. However, it soon became apparent that global access to the vaccines was inequitable. Through a qualitative inquiry as the pandemic unfolded (to mid-2021), we provide an in-depth analysis of why companies engaged with the Covid-19 Vaccines Global Access Facility (COVAX), identifying the internal (to the company) and external factors that facilitated or impeded engagement. While all producers of the World Health Organization (WHO)-approved vaccines engaged with COVAX, our analysis highlights the differential (...) levels of COVAX engagement and identifies contractual obligations, opportunities and company strategy, and reputational pressures as key explanatory factors. We discuss our empirical findings relative to the literature on political corporate social responsibility (PCSR). Accordingly, we question whether pharmaceutical companies lived up to their responsibilities as corporate citizens and conclude that they failed to fulfill the implied responsibility of combating inequitable vaccine distribution. We conclude with implications of our research for practice, in relation to the challenges of global access to Covid-19 vaccines and for access to medicines more generally. (shrink)

Science policy mandates across the industrialized world insinuate more active roles for publics, their earlier participation in policy decisions, and expanded notions of science and technology governance. In response to these policies, engaged scholars in science studies have sought to design and conduct exercises aimed at better attuning science to its public contexts. As demand increases for innovative and potentially democratic forms of public engagement with science and technology, so also do the prospects for insights from science (...) studies to contribute to policy agendas and institutional capabilities. This collection brings together an international set of scholars in science, technology and society who inquire into the meaning, efficacy and responsibility of engaged science studies scholarship as a public matter. (shrink)

Timely public engagement in science presents a broad challenge. It includes more than research into the ethical, legal and social dimensions of science and state-initiated citizen’s participation. Introducing a public perspective on science while safeguarding its public value involves a diverse set of actors: natural scientists and engineers, technology assessment institutes, policy makers, social scientists, citizens, interest organisations, artists, and last, but not least, politicians.

The use of collaborative online social media applications as tools of communication is increasing in contemporary society. Correspondingly, a number of contemporary artists are exploring online interaction in their material public art practice, as a new form of documentation, promotion and creative collaboration. Mapping and analysing these new forms of interaction provide a method to determine the scope of their contribution to new artistic knowledge. This paper argues that contemporary public art practice can be cognisant of both physical (...) and virtual contributions as equally active participants in collaboration. It also identifies the convergence between artist and audience in virtual and physical space, and examines how this is affected by certain conditions and models of behaviour, which influence how a new collaborative creative discourse in public art can be constructed. (shrink)

This chapter focuses on ethical governance, which speaks to the infrastructure, processes, and practices that decrease the probability of performing ethically wrong actions and ethically bad outcomes resulting from relatively innocent actions. The ethics consultant can help spot gaps or other insufficiencies in ethical infrastructure, process, and practice. Ethics consulting consists in engaging in a due diligence process for ethical risk. The goal is to identify possible sources of ethical risk both in terms of features of the product and the (...) ways it may or may not be used, and to recommend feature changes and best practices for ethical deployment and use of the product. Ethics consulting more generally can be seen as aimed at either doing a bunch of good or avoiding a bunch of bad. Ethical challenges often arise in business because of competing assumptions and commitments that create seemingly irresolvable tensions or obscure the potentially bad consequences of particular decisions. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Bioethics ConsultationPat Milmoe McCarrick (bio)(John La Puma, M.D., from the Department of Medicine at Lutheran General Hospital in Chicago, contacted the National Reference Center for Bioethics Literature and suggested bioethics consultation as a topic for the Scope Note Series. He provided an extensive list of citations about ethics consultations collected by him and by David Schiedermayer, M.D., for their new book Ethics Consultation: A Practical Guide.)In Ethics (...) Consultation in Health Care, editors John Fletcher, Norman Quist, and Albert R. Jonsen (I, 1989) define ethics consultation as "the provision of specialized help in identifying, analyzing, and resolving ethical problems that arise in clinical care. In medical ethics the area of consultation has grown rapidly since 1978 when Edmund D. Pellegrino (II, 1978) noted, "we cannot separate technical-moral decisions from the philosophic principles we use to justify them. Medicine and ethics must be engaged with each other at every level."In 1980 Albert Jonsen raised the question of whether an ethicist could be a consultant and said that the ethicist as consultant is a casuist, one whose moral reasoning is based on a system of reasoning that is applied to particular cases. He describes historical casuistry in Western culture, comparing it to modern moral philosophy, and suggests that a "new casuistry seems timely" for ethics consultation (II, Jonsen 1980). By 1984 ethicist Ruth Purtilo recorded her thoughts following an ethics consultation. She raised questions about the ethicist's place on a hospital staff and how to make that role appropriate and beneficial to all concerned, saying that "the ethicist retreats after the consultation; under no circumstances would the outcome of an ethics consultation be that the ethicist became the primary care giver or assumed ongoing responsibility for the clinical management of a case" (II, Purtilo 1984). Nevertheless, in 1992 two physician-ethicists who had been called as ethics consultants for a patient who had requested that he be removed from his ventilator reported that they became the persons who turned off the ventilator and administered the drugs that eased his dying (II, Edwards and Tolle 1992).In recognition of the growing number of persons identifying themselves as [End Page 433] consultants, the Society for Bioethics Consultation was founded in October 1985 as a professional society of persons engaged in bioethics consultation. It encourages and supports consultation, assists in establishing clinical education programs, and raises funds for consultation education. Although the Society has no permanent office, the president (currently, George Kanoti in the Cleveland Clinic Foundation's Bioethics Department) conducts its work and plans an annual meeting.The Joint Commission on the Accreditation of Healthcare Organizations (JCAHO) established new criteria concerning ethics in its 1992 Manual (III, JCAHO 1992) and in a special issue of QRB devoted to ethics consultation (I, Defining Quality 1992). These publications undoubtedly have contributed to the increased use of experts in medical ethics. The Manual notes that all organizations seeking accreditation should have some sort of "mechanism for the consideration of ethical issues arising in the care of patients and to provide education to care givers and patients on ethical issues in health care." A health care institution's eligibility for JCAHO accreditation, which is required for federal reimbursement, requires adherence to this specification (III, JCAHO 1992).The new International Directory of Bioethics Organizations provides an index of 129 different groups that indicated to the authors that they offer bioethics consultations. Of these, 83 are in the United States and 46 are in other countries. The ethics consultants included in the directory encompass a broad group of professionals who will assist patients, families, and primary care medical staff in finding solutions to ethical dilemmas resulting from use of new technologies or new treatments in health care. Consultants often come from the health fields: physicians, nurses, and other health personnel, but other professionals are also active as ethics consultants. Lawyers, pastoral counselors, philosophers, and social workers also offer bioethics consultation services (III, Nolen and Coutts 1993).Drs. Siegler, Pellegrino, and Singer wrote in 1990 that "Physician-ethicists and professional ethicists will continue to work side by side in the future. One is not likely to replace the other, nor is this desirable, because... (shrink)

The timing of this special issue of AJOB probing whether public engagement (PE)1 might help achieve equity in genomics is no coincidence. While many issues discussed by the authors are not entirely...

Scheinerman (2023) proposes a Citizen’s Jury on human germline genome editing (HGGE) to promote more inclusive public engagement, agenda setting and governance. She argues these juries should work...

Public engagement in science and technology has grown in importance as developments in science and technology make increasingly significant impacts on people's lives. Now, efforts to engage publics in social decision-making or consensus-building regarding science and technology involve participation, learning or deliberation opportunities, as well as interactive or coproductive efforts among various sectors in society based on the recognition of scientific activities as a part of social operations - even those performed by scientific communities. We have conducted a (...) community engagement program in the HapMap project, the international human genome program, in Japan since 2002. Consequent upon our various approaches to engage Japanese publics, a range of observations were made, such as that: public engagement is not yet recognized or institutionalized in Japan; there is a wide gap between science and society; and the implications of public engagement in a Japanese context have not been examined enthusiastically, especially from the perspectives of political decision making, social consensus-building or self-determination. In this paper, we provide an overview of public engagement in Japan, and discuss issues and challenges raised by the HapMap community engagement project. We also discuss the implications of public engagement for social decision-making and self-determination, and explore the prospects for public engagement in science and technology in Japan. (shrink)

This book brings the idea of a public—defined in part as the quality of communication among strangers—back into focus. The benefits of doing this are many, but perhaps the most important are to adjust our understanding of what is good teaching and to widen our understanding of what counts as central to the educational process.

Conley and colleagues (2023) explore how calls for broad public engagement (PE) in the case of heritable human genome editing are being put into action, reviewing the activities of five different i...

Conley et al. (2023) analyze the attempts at public engagement (PE) by five governance groups. These projects were conducted by organizations that endorse both the goals and values of PE. The autho...

Over the past few decades, there has been increasing attention focused on the ethics of health research, particularly in low- and middle-income countries. Despite the increasing focus on the literature addressing human protection, community engagement, appropriate consent procedures and ways to mitigate concerns around exploitation, there has been little discussion about how the duration of the research engagement may affect the ethical design and implementation of studies. In other words, what are the unique ethical challenges when researchers engage (...) with host communities for longer periods (10 years or more), and what special considerations does this time commitment generate when applying ethical principles to these kinds of studies? This article begins to outline key areas of ethical concern that arise during long-term, sustained research activities with communities in low-resource settings. Through a review of the literature and consultations with experts in health systems, we identified the following key themes: fair benefits and long-term beneficence; community autonomy, consultation and consent; impacts on local health systems; economic impacts of research participation; ethical review processes; and institutional processes and oversight within research organizations. We hope that this preliminary exploration will stimulate further dialogue and help inform ethical guidance around long-term research engagements in the developing world. (shrink)

In his target article, Ismaili M’hamdi advocates for perfectionist public health policymaking, which entails fostering relevant and objectively valuable public health-related capabilities wh...

This paper considers how parents engage with a large, internationally supported childhood pneumococcal vaccine trial in The Gambia. Current analysis and professional reflection on public engagement is strongly shaped by the imperatives of public health and research institutions, and is thus couched in terms of acceptance and refusal, and . In contrast Gambian parents in the extreme, of free medical treatment, versus onepublic engagement with science’ in a globalized context might be recast, with implications for debates (...) in biomedical ethics, and the sustainability of public participation in medical research. (shrink)

This paper sets out to reimagine education through a cultural perspective and explores education as a performative practice that establishes certain borders of ‘public’ belonging. Wide-spread debates about the public dimension of schools and universities have focused on how economic rationales need to be replaced with alternative visions of education. This paper seeks to contribute to this revisioning of the public in education by reclaiming education as a specifically cultural endeavour, one tied to practices that are at (...) once both performative and aesthetic. To this end, I draw on theoretical notions of publicity that highlight its performative character. I then offer a reading of a socially engaged art project in order to suggest ways in which this performative character of publicity can be seen to be educational. This paper argues that education itself emerges through various cultural enactments that delineate the contours of who counts as a public and who does not. (shrink)

Midstream modulation is a form of public engagement with science which benefits from strategic application of science and technology studies (STS) insights accumulated over nearly 20 years. These have been developed from STS researchers’ involvement in practical engagement processes and research with scientists, science funders, policy and other public stakeholders. The strategic aim of this specific method, to develop what is termed second-order reflexivity amongst scientist-technologists, builds upon and advances earlier more general STS work. However this (...) method is focused and structured so as to help generate such reflexivity—over the ‘upstream’ questions which have been identified in other STS research as important public issues for scientific research, development and innovation—amongst practising scientists-technologists in their specialist contexts (public or private, in principle). This is a different focus from virtually all such previous work, and offers novel opportunities for those key broader issues to be opened up. The further development of these promising results depends on some important conditions such as identifying and engaging research funders and other stakeholders like affected publics in similar exercises. Implementing these conditions could connect the productive impacts of midstream modulation with wider public engagement work, including with ‘uninvited’ public engagement with science. It would also generate broader institutional and political changes in the larger networks of institutional actors which constitute contemporary technoscientific innovation and governance processes. All of these various broader dimensions, far beyond the laboratory alone, need to be appropriately open, committed to democratic needs, and reflexive, for the aims of midstream modulation to be achieved, whilst allowing specialists to work as specialists. (shrink)