With the rapid development of genetic research and applications in health care there is some agreement among funding and regulatory bodies that the public(s) need to be equipped to deal with the choices that the new technologies will offer them, although this does not necessarily include a role for the public in influencing their development and regulation. This paper considers the methods and purpose of public consultations in the area of genetics including large-scale surveys of opinion, consensus (...) conferences and focus groups. Consultation has been undertaken to enable the researchers/policy makers to see what the public do not know and plan more public education to make up the deficiency, to check on areas of concern so that public education can be used to address them or to gain a public mandate for a planned policy. An alternative and more recent approach is to find out what the public(s) do know and understand and to see how experts can learn from them in order to get a fuller view of technology in use. (shrink)

With the rapid development of genetic research and applications in health care there is some agreement among funding and regulatory bodies that the public need to be equipped to deal with the choices that the new technologies will offer them, although this does not necessarily include a role for the public in influencing their development and regulation. This paper considers the methods and purpose of public consultations in the area of genetics including large-scale surveys of opinion, consensus (...) conferences and focus groups. Consultation has been undertaken to enable the researchers/policy makers to see what the public do not know and plan more public education to make up the deficiency, to check on areas of concern so that public education can be used to address them or to gain a public mandate for a planned policy. An alternative and more recent approach is to find out what the public do know and understand and to see how experts can learn from them in order to get a fuller view of technology in use. (shrink)

Genome Canada has funded a research project to evaluate the usefulness of different forms of ethical analysis for assessing the moral weight of public opinion in the governance of genomics. This paper will describe a role of public consultation for ethical analysis and a contribution of ethical analysis to public consultation and the governance of genomics/biotechnology. Public consultation increases the robustness of ethical analysis with a more diverse and rich accounts experiences. Consultation (...) must be carefully and respectfully designed to generate sufficiently diverse and rich accounts of moral experiences. Since dominant groupstend to define ethical or policy issues in a manner that excludes some interests or perspectives, it is important to identify the range of interests that diverse publics hold before defining the issue and scope of a consultation. Similarly, a heavy policy focus and pressures to commercialize products risk oversimplification of the discussion and the premature foreclosure of ethical dialogue. Consequently, a significant contribution of ethical dialogue strengthened by social analysis is to consider the context and non-policy use of power to govern genomics and to sustain social debate on enduring ethical issues. (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)

(Pre-publication draft November 2015: Partial content of "Introduction: The 2030 Agenda," Journal of Global Ethics 11:3 [December 2015], 262-270) This introduction briefly explains the process through which the Sustainable Development Goals have developed from their receipt in 2014 to their passage in September 2015 by the UN General Assembly, and it considers their development in prospect. The Millennium Development Goals, which spanned 1990-2015, present a case study that reveals the changeability of such long-term multilateral commitments. They were enmeshed in overlapping (...) and inconsistent national and intergovernmental commitments reaching from 1995 to 2005, and the text of those goals also evolved, stabilizing for the last time in 2007. The Sustainable Development Goals and attendant commitments should be expected to evolve similarly over their fifteen year run. This presents a concern, for among the three committees established by the UN to create the goals, the two committees charged with public consultation were retired as planned in 2014. The process evident thereafter has displayed a shift towards a strategy of enrolling broad public endorsement that leaves such consultation and specific responsibility to those consulted in doubt. This bodes ill for public deliberation on the goals and for public accountability as the agenda proceeds towards 2030. (shrink)

In September 2007, the Human Fertilisation and Embryology Authority (HFEA) in the United Kingdom concluded that "there is no fundamental reason to prevent cytoplasmic hybrid research . . . this area of research can, with caution and careful scrutiny, be permitted." Later, in January 2008, HFEA issued two research licenses to create humanesque cytoplasmic hybrid embryos from which stem cells could be derived. This article critically examines the public consultation process that preceded these decisions, concluding that the process (...) was flawed and demonstrating how the HFEA documents summarizing the findings of the public consultation process misrepresent the public's contributions to this policymaking initiative. (shrink)

The French bioethics laws of 1994 contain the principles of the anonymity and non commodification of all donations of body parts and products including gametes in medically assisted reproduction. The two revisions of the law, in 2004 and 2011 have upheld the rule. In view of the latest revision process, the French government organized a large public consultation in 2009. Within the event a “consensus conference” was held in Rennes about different aspects of assisted reproduction. In what follows (...) we shall first describe the anonymity clause for gamete donations in the French law and the debates surrounding it. We shall then analyse the procedure used for the 2009 public consultation and the related consensus conference, as well as its upshot concerning the anonymity doctrine. In this respect we shall compare the citizens’ own recommendations on the gamete anonymity issue and its translation in the consultation’s final report drafted by a philosopher mandated by the organizing committee. Whereas the final report cited some fundamental ethical arguments as reason for upholding the provisions of the law—most notably the refusal of the ‘all biological’ approach to reproductive issues—citizens were more careful and tentative in their position although they also concluded that for pragmatic reasons the anonymity rule should continue to hold. We shall argue that the conservative upshot of the public consultation is due to some main underlying presuppositions concerning the citizens’ role and expertise as well as to the specific design of the consensus conference. Our conclusion will be that public consultations and consensus conferences can only serve as an empirical support for devising suitable bioethics norms by using second-order normative assumptions. (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)

This book describes a new method of consulting the public that has been tried successfully around the world. The book combines the theory of democracy with actual practice. Fishkin lays out a theory of "deliberative democracy" and shows with practical examples, how it can be realized.

By comparing models of market-based allocation with state-controlled national health care systems, it will be suggested that the way in which different communicaties deal with the allocation of health care is central to their expression of what might be called a moral self-understanding. That is to say that the provision of health care may be expected to be a focus of communal debate, not simply about morally acceptable and unacceptable actions, but also about the community’s understanding of what it is (...) that makes for a worthwhile and morally defensible human life. This moral self-understanding is seen to be entwined with the different concepts of ‘health’ that are implicit in different systems of allocation. In conclusion, it will be suggested that decisions concerning health care allocation must be made in response to a continuing, public and open debate about that health and health care mean to a particular community. (shrink)

By comparing models of market-based allocation with state-controlled national health care systems, it will be suggested that the way in which different communicaties deal with the allocation of health care is central to their expression of what might be called a moral self-understanding. That is to say that the provision of health care may be expected to be a focus of communal debate, not simply about morally acceptable and unacceptable actions, but also about the community’s understanding of what it is (...) that makes for a worthwhile and morally defensible human life. This moral self-understanding is seen to be entwined with the different concepts of ‘health’ that are implicit in different systems of allocation. In conclusion, it will be suggested that decisions concerning health care allocation must be made in response to a continuing, public and open debate about that health and health care mean to a particular community. (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 use of cost-benefit analysis (CBA) in environmental decision-making and the contingent valuation (CV) technique as input into traditional CBA to elicit environmental values in monetary terms has stimulated an extensive debate. Critics have questioned the appropriateness of both the method and the technique. Some alternative suggestions for the elicitation of environmental values are based on a social process of deliberation. However, just like traditional economic theory, these alternative approaches may be questioned on their implicit value judgements regarding the legitimacy (...) of the social-political organisation of the process of value elicitation. Instead of making assumptions a priori, research efforts should be focused on the processes by which actual public attitudes and preferences towards the environment can best be elicited and fed into environmental or other public policy decision-making. In the study presented in this paper, support was found for both the individual WTP based approach and a participatory social deliberation approach to inform the environmental decision-making process, suggesting that a combination of both approaches is most appropriate. (shrink)

Xenotransplantation, or the use of animal cells, tissues and organs for humans, has been promoted as an important solution to the worldwide shortage of organs. While scientific studies continue to be done to address problems of rejection and the possibility of animal-to-human virus transfer, socio-ethical and legal questions have also been raised around informed consent, life-long monitoring, animal welfare and animal rights, and appropriate regulatory practices. Many calls have also been made to consult publics before policy decisions are made. This (...) paper describes the Canadian public consultation process on xenotransplantation carried out by the Canadian Public Health Association in an arm’s length process from Health Canada, the ministry overseeing government health policy and regulation. Focusing on six citizen fora conducted around the country patterned after the citizen jury deliberative approach, the paper describes the citizen panelists’ recommendations to hold off on proceeding with clinical trials and the rationales behind this recommendation. The consultation process is discussed in the context of constructive technology assessment, a framework which argues for broader input into earlier stages of technology innovation, particularly at the technology design stage. (shrink)

During the coming decades, life scientists will become involved more than ever in the public and private lives of patients and consumers, as health and food sciences shift from a collective approach towards individualization, from a curative to a preventive approach, and from being driven by desires rather than by technology. This means that the traditional relationships between the activities of life scientists – conducting research, advising industry, governments, and patients/consumers, consulting the public, and prescribing products, be it (...) patents, drugs or food products, information, or advice – are getting blurred. Traditional concepts of the individual, role, task, and collective responsibility have to be revised. This paper argues, from a pragmatic point of view, that the concept of public responsibility can contribute considerably in delineating new gray zones between the various roles of the life scientist: conducting research for governments or industry, giving advice, prescribing and selling products, and doing public consultation. The main issues are where new Chinese walls (not Berlin walls) need to be built between these activities, thereby increasing trust between life scientists and the public at large, and how to organize research agendas and to decide upon research topics. (shrink)

When a scientific paper, dissertation or thesis is published the author have a duty to report who has contributed to the work. This recognition can take several forms such as authorship, relevant acknowledgments and by citing previous work. There is a growing industry where publication consultants will work with authors, research groups or even institutions to help get their work published, or help submit their dissertation/thesis. This help can range from proof reading, data collection, analysis, helping with the literature review (...) and identifying suitable journals/conferences. In this opinion article we question whether these external services are required, given that institutions should provide this support and that experienced researchers should be qualified to carry out these activities. If these services are used, we argue that their use should at least be made transparent either by the consultant being an author on the paper, or by being acknowledged on the paper, dissertation or thesis. We also argue that publication consultants should provide an annual return that details the papers, dissertations and thesis that they have consulted on. (shrink)

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

Probably the most interesting feature of the 40-year history of biomedical biotechnology is the extent to which it has been open to – and influenced by – concerns over social values and the public’s voice. Good intentions notwithstanding, however, benchmarks and best practices are woefully lacking for informing the policy-making process with public values. This is particularly true in the United States where the call for “public debate” is often heard but seldom heeded by policy-making bodies. Geneforum, (...) an Oregon-based non-profit, has developed a practical and working model designed to encourage deliberative democratic processes for addressing the ethical and social issues raised by emerging biotechnologies. Ordinary citizens do not need to be scientists to understand the important implications of the new technological advances. When factual information and basic principles are conveyed in linguistically and culturally appropriate ways, the scene is set for a shift from monologue to dialogue, from “I-thinking” to “We-thinking,” to occur. This paper describes the Geneforum model structured to intensify the democratization of policy decision-making, in general, using genomic science, in particular, as one example of its application. (shrink)

Philosophical Issues, Volume 31, Issue 1, Page 240-257, October 2021.

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)

Clinical ethics committees, with their typical threefold function of education, policy formation, and consultation, are present in nearly all U.S. hospitals today, and they are increasingly common in other healthcare settings such as long-term care and even home care. Ethics committees are at least as prevalent in Canadian hospitals as they are in U.S. hospitals, and their presence is growing in Europe, much of Asia, and Central and South America. Although ethics committees serve a variety of needs, their ultimate (...) goal ought to be to promote ethical practices or, in other words, to engender the integration of ethics into the life of the medical center. Of the three primary functions of ethics committees, ethics consultation has historically been the most controversial and problematic, and consult services in many healthcare institutions have struggled to thrive. (shrink)

Consulting the public about the ethical approaches underlying health policies can seem an appealing means of addressing concerns about limited public participation in development of health policy. However ambiguity surrounds questions of whether, or how consultation can really contribute to more defensible decisions about ethical aspects of policy. This paper clarifies the role and limits of public consultation on ethics, beginning by separating different senses of defensibility in decisions on ethics. Defensibility of ethical decisions could (...) be understood either in the sense of legitimacy in virtue of reflecting the opinions of the public whose interests are affected, or in the sense of being able to withstand and respond to challenges presented in ethical debate. The question then is whether there are forms of consultation which have the potential to realise more defensible decisions in either of these senses. Problems of adequately accounting for the views of those affected by policy decisions casts doubt on the plausibility of using consultation as a means of determining the opinions of the public. Consultation can have a role by bringing new ideas and challenges to debate, although it is uncertain whether this will increase the defensibility of any decision on ethics. (shrink)

Within academic circles, the “deficit” model of public understanding of science has been subject to increasing critical scrutiny by those who favor more constructivist approaches. These suggest that “the public” can articulate sophisticated ideas about the social and ethical implications of science regardless of their level of technical knowledge. The seminal studies following constructivist approaches have generally involved small-scale qualitative investigations, which have minimized the pre-framing of issues to a greater or lesser extent. This article describes the Gene (...) Week Project, sponsored by the Wellcome Trust, which attempted to extend this work to a large-scale consultation on genetics and health through the medium of a local daily newspaper. Readers were invited to respond to a set of open-ended questions that accompanied stimulus material published each day for five consecutive weekdays. The articles were written with the intention of extending the limited range of discourses around genetics and biotechnology that are usually presented by the popular media. Responses raised overarching issues about the place of emerging health technologies in society reminiscent of previous open-ended consultations in this field. The paper ends with a critical discussion about the potential of this method to contribute to the further development of open-ended public consultations. (shrink)

In target articles for this special issue, Fox et al. report that ethics consultation (EC) practices have not improved significantly since 2000, and question whether the status quo affords patients...

Exception from Informed Consent (EFIC) regulations detail specific circumstances in which Institutional Review Boards (IRB) can approve studies where obtaining informed consent is not possible prior to subject enrollment.To better understand how IRB members evaluate community consultation (CC) and public disclosure (PD) processes and results, semi-structured interviews of EFIC-experienced IRB members were conducted and analyzed using thematic analysis.Interviews with 11 IRB members revealed similar approaches to reviewing EFIC studies. Most use summaries of CC activities to determine community members’ (...) attitudes; none reported using specific criteria nor recalled any CC reviews that resulted in modifications to or denials of EFIC studies. Most interviewees thought metrics based on Community VOICES’s domains (feasibility, participant selection, quality of communication, community perceptions, investigator/IRB perceptions) would be helpful.IRB members had similar experiences and concerns about reviewing EFIC studies. Development of metrics to assess CC processes may be useful to IRBs reviewing EFIC studies. (shrink)

This paper investigates the key drivers behind the origins of value-for-money (VFM) audit in Canada and the aims, intents, and logics ascribed by the original proponents. Drawing on insights from governmentality and New Public Management, the paper utilizes analysis methods adapted from case study research to review a wide range of primary documentation (e.g., Hansards from the Public Accounts Committee, House of Commons debates, the so-called Wilson report and the FMCS study) and secondary documentation (newspaper articles, Office of (...) the Auditor General internal publications, journal articles). Major findings indicate a rise of a management consulting culture within the Auditor General’s office following the appointment of James Johnson Macdonell. VFM legislation effectively operationalized practices drawn from management consulting expertise by invitation of the consultant. It was offered as an answer to the growing scope and size of government, which had become problematized by the Auditor General in terms of parliament losing control over the public purse. The Auditor General’s invocation of financial crisis led to a substantial broadening of mandate and increase in resources for that office. (shrink)

Services of ethics consultants are nowadays commonly used in such various spheres of life as engineering, public administration, business, law, health care, journalism, and scientific research. It has however been maintained that use of ethics consultants is incompatible with personal autonomy; in moral matters individuals should be allowed to make their own decisions. The problem this criticism refers to can be conceived of as a conflict between the professional autonomy of ethics experts and the autonomy of the persons they (...) serve. This paper addresses this conflict and maintains that when the nature of both ethics consultation and individual autonomy is properly understood, the professional autonomy of ethics experts is compatible with the autonomy of the persons they assist. (shrink)

Ethics consults at a university medical center share many qualitites with those in other settings. What makes them different, if at all, is a difference of degree, not kind. All consult services share the tasks of exploring cases for possible recommendation, contributing to the development of institutional and public policy, and educating colleagues and patients about medical ethics dimensions. Nonetheless, the university setting, devoted as it is to teaching, research, and public service, brings a slightly different focus to (...) these tasks and adds other, peripheral ones. (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)

Cet article présente un service de consultation conjugale situé en Suisse romande, non médicalisé, dont l’orientation psychodynamique et le travail auprès des couples n’est pas sans rappeler la pratique française des conseillers conjugaux-thérapeutes de couple « ancien modèle ». Si l’appellation de consultation conjugale a été retenue, malgré ses inconvénients, c’est qu’elle permet de toucher un très large public, en particulier de nombreuses personnes insuffisamment individuées pour qui l’appartenance au « Nous-couple » est constitutive. Par rapport aux (...) objectifs de travail, l’auteure explore deux voies, illustrées par deux vignettes cliniques : l’une vise à recouvrir une problématique sous-jacente en rétablissant un équilibre antérieur, l’autre à découvrir l’arrangement défensif du couple en introduisant une dynamique de changement. (shrink)

Volume 19, Issue 7, July 2019, Page 59-61.

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)

Since 1989, clinical ethics consultation in form of hospital ethics committees was established in most of the transition countries of Central and Eastern Europe. Up to now, the similarities and differences between HECs in Central and Eastern Europe and their counterparts in the U.S. and Western Europe have not been determined. Through search in literature databases, we have identified studies that document the implementation of clinical ethics consultation in Central and Eastern Europe. These studies have been analyzed under (...) the following aspects: mode of establishment of HECs, character of consultation they provide, and their composition. The results show that HECs in the transition countries of Central and Eastern Europe differ from their western-European or U.S. counterparts with regard to these three aspects. HECs were established because of centrally imposed legal regulations. Little initiatives in this area were taken by medical professionals interested in resolving emerging ethical issues. HECs in the transition countries concentrate mostly on review of research protocols or resolution of administrative conflicts in healthcare institutions. Moreover, integration of non-professional third parties in the workings of HECs is often neglected. We argue that these differences can be attributed to the historical background and the role of medicine in these countries under the communist regime. Political and organizational structures of healthcare as well as education of healthcare staff during this period influenced current functioning of clinical ethics consultation in the transition countries. (shrink)

Objective—Consultation of another physician is an important method of review of the practice of euthanasia. For the project “support and consultation in euthanasia in Amsterdam” which is aimed at professionalising consultation, a protocol for consultation was developed to support the general practitioners who were going to work as consultants and to ensure uniformity. Participants—Ten experts (including general practitioners who were experienced in euthanasia and consultation, a psychiatrist, a social geriatrician, a professor in health law and (...) a public prosecutor) and the general practitioners who were going to use the protocol. Evidence—There is limited literature on consultation: discursive articles and empirical studies describing the practice of euthanasia. Consensus—An initial draft on the basis of the literature was commented on by the experts and general practitioners in two rounds. Finally, the protocol was amended after it had been used during the training of consultants. Conclusions—The protocol differentiates between steps that are necessary in a consultation and steps that are recommended. Guidelines about four important aspects of consultation were given: independence, expertise, tasks and judgment of the consultant. In 97% of 109 consultations in which the protocol was used the consultant considered the protocol to be useful to a greater or lesser extent. Although this protocol was developed locally, it also employs universal principles. Therefore it can be of use in the development of consultation elsewhere. (shrink)

Effective evaluation of any activity requires, first, that we understand what its objectives are, and second, that we can define and measure these objectives. For instance, a publicly listed compan...

Part of the National Placebo Initiative in Canada included public consultations, based on the belief that the views of the public should inform Canadian policy development on what constitutes appropriate placebo use. Public consultations took place nationally in 2003. A deliberative dialogue approach was used, or a structured discussion format designed to facilitate the consideration of complex issues and build consensus. The placebo debate was characterized as having 3 distinct approaches and each were explored. The first approach (...) “Maximize Patient Protection” identified the need for experts to determine appropriate placebo use and that placebos should only be allowed under very restricted conditions. The second approach “Maximize Medical Knowledge” identified that placebos give essential information about the safety and efficacy of new drugs, and are appropriate when the rights, safety and well-being of research participants are ensured. The third approach “Maximize Patient Autonomy” identified that the current system of regulating placebo use is paternalistic and that patients should be able to define what is in their best interests and have more leeway to determine for themselves if they wish to participate in a placebo-controlled trial. Advantages and disadvantages of each approach were considered and feedback on what constitutes appropriate placebo use was sought. The major findings were that: PCTs were considered a valuable and acceptable part of advancing medical knowledge; research using placebos must be valid and justifiable; a patient-centred approach needs to be fostered; patient autonomy (choice) should be a first consideration and take clear precedence in trials of low to medium risk; patient protection (or health) may need to “trump” patient autonomy at higher levels of risk and/or patient vulnerability; placebos are not a violation of the duty of care as duty of care is best met by identifying a choice for patients, whenever a choice is available. These consultations clearly were not designed to produce conclusive evidence, but rather to provide some useful insights into what the public may think about placebo use; additional studies are indicated. (shrink)

The COVID-19 pandemic swept through New York City swiftly and with devastating effect. The crisis put enormous pressure on all hospital services, including the clinical ethics consultation team. This report describes the recent experience of the ethics consultants and Columbia University Irving Medical Center during the COVID-19 surge and compares the case load and characteristics to the corresponding period in 2019. By reporting this experience, we hope to supplement the growing body of COVID-19 scientific literature and provide details of (...) the human toll the virus took on our hospitals and communities. We also aim to highlight the role of the clinical ethics consultant as well as areas of policy and law that may need to be addressed in order to be better prepared for a future public health crisis. (shrink)

Biobanks that are run on an opt-in basis depend on people having the motivation to give and to trust in those who control their samples. Yet in the UK trust in the healthcare system has been in decline and there have been a number of health-related scandals that have received widespread media and public attention. Given this background, and the previous public consultations on UK Biobank, the paper explores the way people express their trust and mistrust in the (...) area of medical and genetic information through discussions in six focus groups held in different areas of Britain. The themes that emerged in the discussion were the special character of genetic data; the ease with which information spreads; the public/private divide in genetic research; the potential of genetic information to harm people; choice, consent and lack of control; and the difficulty of establishing trustworthy governing arrangements. The expert agenda of policy-makers and medical ethics does not address the broader concerns expressed by participants. It seems that public consultation and the language of openness and transparency may not be sufficient to establish trust in the governance of genetic databases. Donors will be asked to give freely without any return but the participants' perception of those using the samples is that they are motivated by success and profit rather than healthcare priorities. In this context altruism seems naive and even dangerous. In order to place their trust well people need evidence of a relationship with obligations and expectations on both sides. (shrink)