The literature fails to reflect general agreement over the nature of the services and procedures provided by bioethicists, and the training and core competencies this work requires. If bioethicists are to define their activities in a consistent way, it makes sense to look for common ground in shared communities of practice. We report results of a survey of the services and procedures among bioethicists affiliated with the University of Toronto Joint Centre for Bioethics (JCB). This is the largest (...) class='Hi'>group of bioethicists working in healthcare organizations in Canada. The results suggest there are many common services and procedures of JCB bioethicists. This survey can serve as a baseline for further exploration of the work of JCB bioethicists. Common practices exist with respect to the domains of practice, individual reporting relationships, service availability within business hours and the education and training of the bioethicist. (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)

Malm and colleagues (2008) consider (and reject) five arguments putatively justifying the idea that healthcare workers (HCWs) have a duty to treat (DTT) during a pandemic. We do not have sufficient...

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...

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)

For decades a debate has played out in the literature about who bioethicists are, what they do, whether they can be considered professionals qua bioethicists, and, if so, what professional responsibilities they are called to uphold. Health care ethics consultants are bioethicists who work in health care settings. They have been seeking guidance documents that speak to their special relationships/duties toward those they serve. By approving a Code of Ethics and Professional Responsibilities for Health Care Ethics Consultants, the American Society (...) for Bioethics and Humanities (ASBH) has moved the professionalization debate forward in a significant way. This first code of ethics focuses on individuals who provide health care ethics consultation (HCEC) in clinical settings. The evolution of the code's development, implications for the field of HCEC and bioethics, and considerations for future directions are presented here. (shrink)

Clinical ethicists encounter the most emotionally eviscerating medical cases possible. They struggle to facilitate resolutions founded on good reasoning embedded in compassionate care. This book fills the considerable gap between current texts and the continuing educational needs of those actually facing complex ethics consultations in hospital settings. 28 richly detailed cases explore the ethical reasoning, professional issues, and the emotional aspects of these impossibly difficult consultations. The cases are grouped together by theme to aid teaching, discussion and professional growth. The (...) cases inform any reader who has a keen interest in the choices made in real-life medical dilemmas as well as the emotional cost to those who work to improve the situations. On a more advanced level, this book should be read by ethics committee members who participate in ethics consultations, individual ethics consultants, clinicians who seek education about complex clinical ethics cases, and bioethics students. (shrink)

The prospect of using genome technologies to modify the human germline has raised profound moral disagreement but also emphasizes the need for wide-ranging discussion and a well-informed policy response. The Hinxton Group brought together scientists, ethicists, policymakers, and journal editors for an international, interdisciplinary meeting on this subject. This consensus statement formulated by the group calls for support of genome editing research and the development of a scientific roadmap for safety and efficacy; recognizes the ethical challenges involved in (...) clinical reproductive applications of genome editing but, importantly, rejects the idea that human reproductive germline modification is necessarily morally unacceptable; and highlights the importance of meaningful engagement in discussions of genome editing and the development of regulation and oversight mechanisms to govern future uses of such technologies. (shrink)

American Academy of Pediatrics (AAP) and American College of Medical Genetics (ACMG) recently provided two recommendations about predictive genetic testing of children. The Clinical Sequencing Exploratory Research Consortium's Pediatrics Working Group compared these recommendations, focusing on operational and ethical issues specific to decision making for children. Content analysis of the statements addresses two issues: (1) how these recommendations characterize and analyze locus of decision making, as well as the risks and benefits of testing, and (2) whether the guidelines conflict (...) or come to different but compatible conclusions because they consider different testing scenarios. These statements differ in ethically significant ways. AAP/ACMG analyzes risks and benefits using best interests of the child and recommends that, absent ameliorative interventions available during childhood, clinicians should generally decline to order testing. Parents authorize focused tests. ACMG analyzes risks and benefits using the interests of the child and other family members and recommends that sequencing results be examined for additional variants that can lead to ameliorative interventions, regardless of age, which laboratories should report to clinicians who should contextualize the results. Parents must accept additional analysis. The ethical arguments in these statements appear to be in tension with each other. (shrink)

Background: There are numerous benefits to ethics consultation services, but little is known about the reasons different professionals may or may not request an ethics consultation. Inter-professional differences in the perceived utility of ethics consultation have not previously been studied.Methods: To understand profession-specific perceived benefits of ethics consultation, we surveyed all employees at an urban tertiary children’s hospital about their use of ethics committee services (n = 842).Results: Our findings suggest that nurses and physicians find ethics consultations useful for different (...) reasons; physicians were more likely to report normative benefits, while nurses were more likely to report communicative and relational benefits.Conclusions: These findings support an open model of ethics consultation and may also help ethics committees to better understand consultation requests and remain attuned to the needs of various professional groups. (shrink)

Background and aimsFew Polish hospitals have Hospital Ethics Committee (HECs) and the services are not always adequate. In this situation, the role of HECs, in providing, among others, ethical advice on the discontinuation of persistent therapies, may be taken over by other entities. The aim of our research was to investigate, how often and on what issues hospital chaplains are asked for ethical advice in reaching difficult medical decisions.MethodsA survey of 100 Roman Catholic chaplains was conducted, that is, at least (...) 10% of all chaplains currently working in Polish hospitals.ResultsOf the participants, 29% confirmed receiving requests for advice in making a morally difficult medical decision. Receiving this type of request was not conditional on the place of their service, duration of their pastoral mission or HEC membership. The largest group of chaplains (21%) encounter questions concerning the ethical dilemmas associated with discontinuing persistent therapy. Patients and their families most often raise issues related to the methods of birth control, and the medical staff raise the issue of termination of pregnancy—as reported by 9% and 15% of chaplains, respectively. Most of the chaplains asked for help (79%) experience a deficit of specialist knowledge in the area of medicine or ethics.ConclusionsIn order to improve the quality of ethical consultations in Polish hospitals, in addition to further development of HECs, it is postulated to develop a system for bioethical education of chaplains. (shrink)

The movement advocating the formal certification of clinical ethics consultants may result in major changes to the field of clinical ethics consultation by creating a new standard of care. The actual certification process is still in the development phase, but unanswered questions include: What will certification cost, and, Who will pay? Currently there is little salary support for ethics consultants and no regulation requiring healthcare institutions to offer clinical ethics consultation. Without the support of healthcare administrators and accreditation bodies, this (...) may remain unchanged.Healthcare administrators may be unwilling to pay for certification or professional services if accreditation bodies do not require healthcare institutions to provide certified ethics consultants’ services. If consultants will not be reimbursed or paid, they may not seek certification. If certified consultants are required, healthcare administrators may look for ways to cover the costs for providing this service, including insurance or third-party reimbursement and direct billing of patients for consultations, which may affect who performs and who participates in ethics consultation. However, this is less than ideal, as bioethicists believe ethics consultation should be available to all as part of providing safe, quality ethical care and support and guidance for patients, families, and healthcare staff.Going forward, bioethicists should study quality improvement, patient safety, and cost-savings resulting from certification-eligible clinical ethics consultants’ activities. Administrators and financial personnel can be surveyed regarding their support for the certification process. Bioethicists should enlist the help of patient rights and safety advocacy groups, professional medical associations, and healthcare administrators. Bioethicists should invite accreditation bodies, healthcare administrators, and financial personnel to collaborate in the development of the certification process. Without their support, certification may be of value only to the bioethics community, and may have little standing in actual clinical healthcare institution settings. (shrink)

The executive board of the Academy for Ethics in Medicine and two AEM working groups formulated standards and recommendations for clinical ethics consultation in 2010, 2011, and 2013. These guidelines comply with the international standards like those set by the American Society for Bioethics and Humanities. There is no empirical data available yet that could indicate whether these standards and recommendations have been implemented in German hospitals. This desideratum is addressed in the present study. We contacted 1.858 German hospitals (...) between September 2013 and January 2014. A follow-up survey was conducted between October 2014 and January 2015. The data of the initial survey and the follow-up survey were merged and evaluated. The statements of the participants were compared with the standards and recommendations. The standards of the AEM concerning the tasks of clinical ethics consultation are employed by a majority of participants of the study. Almost all of these participants document their consultation activities by means of protocols or entries in the patient file. There are deviations from the recommendations of the AEM working groups regarding the drafting of statutes, activity reports, and financial support. The activities of clinical ethics consultation predominantly comply with the standards of the AEM and recommendations for the documentation. The recommendations for evaluation should be improved in practice. This applies particularly for activity reports in order to evaluate the activities. Internal evaluation could take place accordingly. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Clinical Bioethics at NIH:History and A New VisionJohn C. Fletcher (bio)On July 3, 1995, Dr. John I. Gallin, Director of the Magnuson Clinical Center of the National Institutes of Health (NIH), convened a one-day "Conference on the Future of Clinical Bioethics at the National Institutes of Health Intramural Program." Conferees included NIH officials and a panel of consultants from bioethics programs around the nation.1 The subject (...) was the future of NIH's intramural bioethics program and specifically a vision of a new multi-component program, presented by Dr. Gallin, the first speaker. Dr. Harold Varmus, Director of NIH, was there to assure his support for Dr. Gallin's vision. This author, honored to be second speaker, was invited to sketch a brief history of bioethics at NIH. The present article reviews some of this history and then reports on Dr. Gallin's proposal, points of consensus among speakers and conferees, and the search for a Chief of the Clinical Bioethics Program.History of Bioethics at NIHIt is often said that NIH is a well-kept secret as the nation's leading biomedical research facility. Also, few people know that NIH has a long history in bioethics. Some key events in that history are shown in Figure 1, beginning with two that occurred prior to the birth of bioethics. NIH made an early policy response to protect human subjects of research and to find acceptable limits for scientific freedom. The Clinical Center (CC), a 550-bed research hospital, opened in 1953. A subcommittee of the Medical Board, the Clinical Research Committee (CRC), was formed for prior group review of all studies with normal volunteers. The traditional practice was for researchers themselves to decide when studies would begin, which subjects to recruit, and whether informed consent would be sought. The CRC intervention bit into this tradition. In addition, patient studies that posed significant risks or departed widely from medical practice were reviewed by referral from the Clinical Directors of the various Institutes. Was this CRC an early institutional review [End Page 355] board (IRB)? As a guest researcher, I was permitted to observe the CRCs meetings between 1966 and 1969. It functioned much like an IRB but had no community or non-scientist members. Other IRB-like review groups undoubtedly existed prior to the CRC. Robert Levine (personal communication, September 7, 1995) recalls that Beth Israel Hospital in Boston had one in 1938. Historical research is clearly needed on the earliest forms of research review.Table 1. Bioethics at NIHEventYearClinical Research Committee1953Surgeon-General's PPO #1291966NIGMS funds Hastings Genetics Group1973OPRR's Mission1974NLM's grant to KennedyInstitute for Bibliography of Bioethics1974Recombinant DNA Advisory Committee1974STEP Series Bioethics Speakers1975Pre-IRBs at the CC1975-76Assistant for Bioethics to Director, CC1977RAC-Human Gene Therapy Subcommittee1983Lipsett Proposal (ICD)1983Liaison Group, CC1983Bioethics Program, CC1985Durable Power of Attorney for Researchwith Incapacitated Subjects1985-86NLM funds National Reference Centerfor Bioethics Literature1985National Institute for Nursing Research1986Bioethics Post-Doctoral Fellows Program1989ELSI Program1989Bioethicists on CC-IRBs1989CC-Ethics Committee1990Office of Human Subjects Research1992 [End Page 356]Between 1963 and 1967, the media exposed instances of ethically troubling research, and Beecher (1966) and Pappworth (1967) published sharp criticisms of the weak state of research ethics. In 1966, Surgeon-General William Stewart and NIH Director James Shannon issued a policy requiring local group review of all research involving human subjects before making an application for NIH peer review (Surgeon General 1966). The policy was the first in any nation to mandate ethics committees for clinical research. However, it did not apply to the NIH intramural program until Congress passed the National Research Act in 1974 (Public Law 93-348; 202, 88 Stat. 342, 1974). This lag permitted NIH intramural investigators the luxury of feeling above the norms imposed on ordinary mortals and guaranteed more resistance to the inevitable change to come. Resistance to change marked the intramural program from the mid-1960s to the mid-1970s... (shrink)

This paper explores the evolution of the Universal Declaration on Bioethics and Human Rights , which was adopted by the United Nations Educational, Scientific and Cultural Organization in 2005. While the draft UDBHR generated controversy among bioethicists, the process through which it evolved excluded mainstream bioethicists. The absence of peer review affects the declaration’s content and significance. This paper critically analyses its content, commenting on the failure to acknowledge socioeconomic and other factors that impede its implementation. The UDBHR outlines (...) ideal standards but fails to provide guidance that can be readily applied in different settings. It strives for universality but does not contribute to understanding of universal or global bioethics.The Universal Declaration on Bioethics and Human Rights was developed through multinational consultation over several years. It was officially adopted by the United Nations Educational, Scientific and Cultural Organization in October 2005.1 This paper explores the process of drafting the UDBHR, critically analyses its content and considers its status in the context of global bioethics. It comments on the UDBHR’s failure to acknowledge or respond to socioeconomic and other factors that impede attempts to implement it. The paper concludes that the process of drafting the declaration excluded a necessary group of stakeholders and that the UDBHR therefore fails to provide the guidance it aims to offer.Identifying a need to develop universally applicable ethical guidelines within a context of cultural pluralism, Unesco began developing a draft Declaration on Universal Norms on Bioethics. A near final draft was posted on Unesco’s website in February 2005 and replaced in June 2005 with the version subsequently adopted as the UDBHR. Stakeholder consultation on the draft involved hundreds of people in many diverse nations. These were seemingly limited to consultations with Unesco affiliates, however, and public comment was not solicited. …. (shrink)

Clinical ethics consultants represent a multidisciplinary group of scholars and practitioners with varied training backgrounds, who are integrated into a medical environment to assist in the provision of ethically supportable care. Little has been written about the degree to which such consultants are accountable for the patient care outcome of the advice given. We propose a model for examining degrees of internally motivated accountability that range from restricted to unbounded accountability, and support balanced accountability as a goal for practice. (...) Finally, we explore implications of this model for training of clinical ethics consultants from diverse academic backgrounds, including those disciplines that do not have a formal code of ethics relating to clinical practice. (shrink)

Secular bioethicists do not speak from a place of distinction, but from within particular culturally, socially, and historically conditioned standpoints. As partisans of moral and ideological agendas, they bring their own biases, prejudices, and worldviews to their roles as ethical consultants, social advocates, and academics, attempting rhetorically to sway others and shift policy to a preferred point of view. Their pronouncements represent just one voice among others, even when delivered with strident rhetoric, in an educated and knowing tone, from within (...) institutional positions of power. This essay argues that, given the hegemony of progressive secular bioethics, traditional Christians routinely face epistemic injustice within medicine. That is, Christian knowledge regarding moral reality is all too often demeaned or dismissed, unless such norms can be translated into and defended within a secular ethos. Given such systemic bias, I argue, Christians also experience significant moral distress: they are fully aware of their moral obligations and what they ought to do, but institutionalized power structures make it nearly impossible to so act. But, Christian physicians are not mere technicians, obliged to provide whatever patients request from the list of legally available treatments. That antireligious critics seek to remove the rights of Christian physicians to limit how they practice medicine, where they do not offer or refer for abortion, euthanasia, physician-assisted suicide, and other inappropriate forms of care, is unjustified and prejudicial, singling out Christians, and other religious groups, for singular treatment. Regardless of what the law requires or institutional policy demands, however, Christians are obliged to submit to God in all things. As a result, they may at times find themselves required to engage in acts of civil disobedience. (shrink)

Clinical ethics consultation not only interprets moral issues at the bedside and is not restricted to giving support for the “technical” handling of these moral issues, but it has to substantively address moral values, norms, and conflicts in the process of discussing cases and problems. We call this the normative dimension and use normative in the sense of embracing moral values and convictions of persons and groups, norms, and relevant professional and ethical guidelines as well as legal frameworks. The roles (...) and activities of the consultant as a person and the quality of CEC as a process are discussed in the American Society of Bioethics and Humanities’ Core Competences for Healthcare Ethics Consultation. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Private Bioethics Forums:Counterpoint to Government BodiesCynthia B. Cohen (bio) and Elizabeth Leibold McCloskey (bio)Ethical issues associated with reproductive technologies quickly gain public attention. The front pages of newspapers have featured stories about grandmothers giving birth to their own grandchildren, couples "renting" wombs from surrogates, and researchers prepared to transplant fetal ovaries into women unable to produce viable eggs. With each new and bolder foray into reproductive realms, the (...) question of whether to set limits on the use of such technologies surfaces. An ancillary debate inevitably ensues about the proper forum for discussing and deciding such limits. The recent announcement of human embryo splitting or cloning research is no exception to this pattern. Articles in both the popular press and academic circles in the wake of the reported research contain lamentations about the absence of a national ethics body that could address the ethical issues raised by the cloning experiment. This research also breathed new life into congressional calls to create a government bioethics commission.1At times, it appears that the substantive questions raised by a procedure like cloning are subsumed under the debate about whether this ethics group or that should be convened to study the matter. But the forum in which options are discussed is as crucial to the development of sound ethical thought and public policy as are the conclusions themselves. Thus, we address the question of whether a private, as opposed to a public, bioethics body provides a distinctively useful forum for reaching an understanding of issues such as cloning that have significant ethical and public policy implications.A 1993 Office of Technology Assessment report, in which the authors suggest that a new federal bioethics commission might be useful, has helped to frame recent discussions about the value of government-sponsored bioethics bodies (Office of Technology Assessment 1993). To most people, the question of whether a national forum for bioethics is needed is synonymous with the question of whether a new federal body should be convened. Yet the existence of the National Advisory Board on Ethics in Reproduction (NABER) suggests that the scope of the question should be broadened. [End Page 283]NABER was born in 1992, in part as a response to an Institute of Medicine report on infertility. That document endorsed the formation of a nongovernment body to develop guidelines for assisted reproductive measures and fetal research in the event that a government body was not forthcoming (Institute of Medicine 1989). NABER, which was founded by the American College of Obstetricians and Gynecologists and the American Fertility Society, now functions wholly independently of those groups and is supported by private foundations including the Ford, Greenwall, and Josiah Macy, Jr., Foundations and the Walter and Elise Haas Fund. NABER has issued a report on ethical issues related to the use of fetal tissue (Cohen and Jonsen 1993), is about to publish a report and background papers on oocyte donation, and presents a report on human cloning in this issue of the Kennedy Institute of Ethics Journal. In addition, it has developed a protocol for NABER review of research proposals from federal agencies subject to federal guidelines on the use of human subjects in research.Thus, in function and form, NABER was envisioned as a substitute for a government body, and it now functions in a manner similar to several types of government bioethics groups. Like the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research (National Commission) and the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (President's Commission), NABER functions primarily through the publication of reports intended for a broad audience of practitioners, patients, policymakers, and the general public. Just as the Ethics Advisory Board of the late 1970s examined ethical issues related to specific protocols or types of research as they arose, NABER's purposes include scrutinizing the ethics of various research efforts in the reproductive area.NABER also parallels past government bodies in form. Like these groups, NABER is a multidisciplinary board that meets regularly and is supplemented by consultants and staff who provide research and writing for the board. Its members are nationally recognized in... (shrink)

A significant amount of discussion in the bioethics community has been devoted to the question of whether individuals performing ethics consultations in healthcare institutions have any special expertise. In addition, articles in the lay press have questioned the “added value” that bioethicists bring to ethical dilemmas. Those at the forefront of the bioethics community have argued repeatedly that those doing ethics consults cannot simply be well-intentioned individuals, that some training in bioethics, group process, and facilitation is (...) necessary to competently execute a consult. As one bioethicist commented:if you approach any endeavor as an amateur activity, you will get, in the end, an amateurish version of the activity. Without a sufficient commitment of personnel, time, support, and financial resources, a healthcare organization will get the ‘ethics’ program … it set out to create: an inept, unskilled, inefficient, and highly risky ‘program’ in healthcare ethics and bioethics. (shrink)

A significant amount of discussion in the bioethics community has been devoted to the question of whether individuals performing ethics consultations in healthcare institutions have any special expertise. In addition, articles in the lay press have questioned the “added value” that bioethicists bring to ethical dilemmas. Those at the forefront of the bioethics community have argued repeatedly that those doing ethics consults cannot simply be well-intentioned individuals, that some training in bioethics, group process, and facilitation is (...) necessary to competently execute a consult. As one bioethicist commented:if you approach any endeavor as an amateur activity, you will get, in the end, an amateurish version of the activity. Without a sufficient commitment of personnel, time, support, and financial resources, a healthcare organization will get the ‘ethics’ program … it set out to create: an inept, unskilled, inefficient, and highly risky ‘program’ in healthcare ethics and bioethics. (shrink)

This article aims at raising awareness about the intersection of populism and bioethics. It argues that illiberal forms of populism may have negative consequences on the evolution of bioethics as a discipline and on its practical objectives. It identifies at least seven potential negative effects: (1) The rise of populist leaders fosters “epistemological populism,” devaluing the expert and scientific perspectives on which bioethics is usually based, potentially steering policies away from evidence-based foundations. (2) The impact of “moral (...) populism” is evident in legislative prioritization of the “morality of common people,” often solicited through popular consultations on issues like abortion, drug legalization, or LGBT issues. (3) Populist distrust in autonomous governmental agencies and advisory bodies, including national bioethics commissions, can compromise expert advice, challenging both their authority and decisions. (4) Populists may erode transparency by undermining institutions responsible for it, hindering access to vital information for bioethical research. (5) “Medical populism” creates adversarial dynamics, prompting politicians to make simplistic healthcare policy decisions based on political rather than informed criteria, adversely affecting vulnerable populations. (6) Radical-right populist parties’ “welfare chauvinism” may shape healthcare policies, impacting service access and resource allocation, disproportionately affecting vulnerable groups such as migrants, but indirectly affecting the rest of the population. (7) Nationalist sentiments associated with populism may obstruct international collaborations, posing challenges for global bioethics that seeks to address ethical concerns beyond national borders. In summary, these dynamics raise significant bioethical concerns encompassing evidence-based decision-making, transparency, healthcare equity, and global collaboration. How bioethicists may respond to these challenges is discussed. (shrink)

In the rapidly evolving healthcare environment, perhaps no role is in greater flux and redefinition than that of the clinical bioethicist. The discussion of ethics consultation in the bioethics literature has moved from an ambiguous concern regarding its proper place in the clinical milieu to the more provocative question of which methods and theories should best characterize the intellectual and practical work it claims to do. The American Society for Bioethics and Humanities addressed these concerns in its 1998 (...) report, CoreCompetenciesforHealthCareEthicsConsultation. The report tries to answer the question as to what disciplinary training, background experience, and levels of knowledge in ethics the clinical ethics consultant should have, and what specific skills and character traits the clinical ethics consultant should cultivate. In addition to acquiring knowledge of common bioethical issues, theoretical concepts in ethical theory and moral reasoning, and health-related law and policy, the report also recommends that ethics consultants demonstrate knowledge of the health beliefs and perspectives of patients and healthcare providers. In our opinion, this recommendation underscores a crucial aspect of the practice of ethics consultation in the increasingly multicultural settings of healthcare institutions. Clearly, the dynamic of American life and culture is permeated with diversity and variety as new groups suffuse their own beliefs and faith perspectives into the health sector. New immigrant groups force society to question traditional healthcare practices and to accommodate changing medical needs. (shrink)

The Presidential Commission for the Study of Bioethical Issues was created by President Obama in 2009 to identify and promote policies and practices that ensure scientific research, health care delivery, and technological innovation are conducted in socially and ethically responsible manners. The bioethics commission is an independent and thoughtful group of experts who advises the President and, in so doing, strives to educate the nation on bioethical issues. As part of the effort to promote policies and practices ensuring (...) the ethical conduct of research, innovation, and health care delivery, the bioethics commission staff, in consultation with commission members, has used the bioethics commission reports to develop pedagogical materials for traditional and nontraditional educational settings. The goal is to use contemporary issues addressed by the bioethics commission to support teaching of bioethics ideas, principles, and theories across the major areas of study and practice. (shrink)

Issues related to controlled human infection studies using Schistosoma mansoni (CHI-S) were explored to ensure the ethical and voluntary participation of potential CHI-S volunteers in an endemic setting in Uganda. We invited volunteers from a fishing community and a tertiary education community to guide the development of informed consent procedures. Consultative group discussions were held to modify educational materials on schistosomiasis, vaccines and the CHI-S model and similar discussions were held with a test group. With both groups, a (...) mock consent process was conducted. Fourteen in-depth key informant interviews and three group discussions were held to explore perceptions towards participating in a CHI-S. Most of the participants had not heard of the CHI-S. Willingness to take part depended on understanding the study procedures and the consenting process. Close social networks were key in deciding to take part. The worry of adverse effects was cited as a possible hindrance to taking part. Volunteer time compensation was unclear for a CHI-S. Potential volunteers in these communities are willing to take part in a CHI-S. Community engagement is needed to build trust and time must be taken to share study procedures and ensure understanding of key messages. (shrink)

Several approaches to clinical ethics consultation (CEC) exist in medical practice and are widely discussed in the clinical ethics literature; different models of CECs are classified according to their methods, goals, and consultant’s attitude. Although the “facilitation” model has been endorsed by the American Society for Bioethics and Humanities (ASBH) and is described in an influential manual, alternative approaches, such as advocacy, moral expertise, mediation, and engagement are practiced and defended in the clinical ethics field. Our Clinical Ethics (...) Center in Paris was founded in 2002 in the wake of the Patients’ Rights Act, and to date it is the largest center that provides consultation services in France. In this article we shall describe and defend our own approach to clinical ethics consultation, which we call the “Commitment Model,” in comparison with other existing models. Indeed commitment implies, among other meanings, continuity through time, a series of coherent actions, and the realization of important social goals. By drawing on a recent consultation case, we shall describe the main steps of our consultation procedure: interviews with major stakeholders, including patients and proxies; case conferences; and follow up. We shall show why we have chosen the term “commitment” to represent our approach at three different but interrelated levels: commitment towards patients, within the case conference group, and towards society as a whole. (shrink)

Living organ donation will soon become the source of the majority of organs donations for transplant. Should mentally handicapped people be allowed to donate, or should they be considered a vulnerable group in need of protection? I discuss three cases of possible living organ donors who are developmentally disabled, from three different cultures, the United States, Germany, and India. I offer a brief discussion of three issues raised by the cases: (1) cultural diversity and cultural relativism; (2) autonomy, rationality, (...) and self-interest; and (3) the proper use and role for clinical ethics consults. (shrink)

The year 2013 may someday be seen as the year a new profession was born. Clinical ethics consultation has been practiced in different ways for roughly 30 years, originally initiated by a group of h...

Although bioethics consultation has always drawn the ire of critics, its extension into areas such as paid consultation with private industry has raised new concerns. Critics of consulting relationships with industry question the sincerity of for-profit corporations who seek ethical advice, alleging that a desire for improved public relations is a primary motivation of these corporations. They also question whether compensation for ethical advice creates insuperable conflicts of interest that bias the work produced. The decision of two influential professional (...) societies to establish a joint task force to examine bioethics consultation with industry reflects the seriousness of these and other concerns about this practice. The report of this task force, although controversial, has stimulated broad discussion about the ethical commitments of bioethicists and highlighted the need for clearer professional standards of conduct. (shrink)

Is bioethics consultation a profession? Withfew exceptions, the arguments andcounterarguments about whether healthcareethics consultation is a profession haveignored the historical and cultural developmentof professions in the United States, the wayssocial changes have altered the work andboundaries of all professions, and theprofessionalization theories that explain howmodern societies institutionalize expertise inprofessions. This interdisciplinary analysisbegins to fill this gap by framing the debatewithin a larger theoretical context heretoforemissing from the bioethics literature. Specifically, the question of whether ethicsconsultation is a profession is (...) examined fromthe perspectives of trait theory, Wilensky''sfive-stage process of professionalization,Abbott''s interdependent system of professions,and Haug''s deprofessionalization thesis. Whilehealthcare ethics consultation does not meetthe criteria to claim professional status,neither could most professions pass these idealtheoretical standards. Instead of a yes or nodichotomous response to the question, it ismore helpful to envision a professionalizationcontinuum with sales clerks or carpenters atone end and medicine or law at the other. During the past decade healthcare ethicsconsultation has been moving along thiscontinuum toward greater professional status. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:News from the President’s Council on BioethicsF. Daniel Davis (bio) and Diane M. Gianelli (bio)As most readers of this column already know, the President's Council on Bioethics went through a major transition during the past year when Leon Kass—in October 2005—handed the chairman's gavel over to Georgetown University's Edmund Pellegrino. Dr. Kass has remained on the Council as a member.1When the gavel change took place, the Council's phone (...) started ringing. Everyone wanted to know the same thing: What topics would the Council take up this term? Dr. Pellegrino's answer was always the same: The Council's agenda would be established through a consultative process with the members themselves and with an eye to those problems and controversies in bioethics to which we, as a body, can make a contribution.Taking its cue from the list of potential topics suggested by members, the Council—over the course of the next several meetings—listened to experts on such topics as children and bioethics (with a focus on children in clinical research), organ transplantation, and that oft-cited-but-hard-to-define concept, "human dignity."The latter topic entered the arena of discussion because it is a concept that is cited frequently in the bioethics literature, and it is also one that has figured prominently in Council discussions and documents. Although the concept is widely invoked, there is no universal understanding of what it means, and it is not easy to encapsulate into a one-size-fits-all definition. Indeed, some critics maintain that appeals to human dignity are fig leaves used to camouflage unconvincing arguments. So between December 2005 and April 2006, the Council devoted several sessions to various perspectives on "human dignity: its meaning, its foundations, and its relevance to bioethics." After hearing from James Childress, Patricia Churchland, Daniel Sulmasy, and Paul Weithman2 on the topic, the Council decided to issue a volume of approximately 20 essays, some by Council members and others by scholars from a variety of relevant disciplines.3 The volume is expected to encompass a broad array of opinion on the topic of human dignity and is scheduled to be published next spring."Children" were also the focus of several sessions during the past year. The Council's last report addressed care giving for the elderly.4 After it was issued, several members suggested it was time to focus on the youngest members of [End Page 375] society. The challenge, of course, was to find a topic that was both timely and relevant—and one about which the Council was uniquely qualified to make a contribution. A number of experts in a variety of related fields testified before the Council about possible issues it could explore: newborn screening for genetic disorders; decision-making standards for those who lack capacity; ethical issues in neonatal and pediatric intensive care; pharmacology and psychiatric disorders in children; and children and clinical research. In addition, a number of groups and individuals involved in related topics met with staff to discuss their interests and concerns.This exploratory engagement with facets of the broad topic of children and bioethics led the Council to focus, more narrowly, on a cluster of issues concerning newborn screening for genetic disorders—a topic on which it is likely that the Council will issue a white paper, possibly by next summer. The stimulus for this particular focus has been the American College of Medical Genetics's recommendation that all newborns in the U.S. be screened for a panel of 29 disorders.5 Currently, each state decides for its residents which conditions are subject to mandated screening, so it is possible to get early diagnoses of treatable disorders in one geographical area but not in another. Proponents of screening find the federal approach to mandated screening more equitable. Potential ethical problems, however, exist with the proposal. Some want to ensure that newborns are screened only for treatable conditions on grounds that it would be too burdensome to discover one is carrying the gene for a late-onset disease that cannot be prevented. Others want to make sure that insurance coverage for individuals and their families is... (shrink)

Barby-Blumenthal et al. (2022) argue that academic philosophy still has important contributions to make to bioethics. We agree with some and disagree with many of their claims. In this commentary,...

Background: Bioethics consultations are conducted in varied settings, including hospitals, universities, and other research institutions, but there is sparse information about bioethics consultations conducted in corporate settings such as pharmaceutical companies. The purpose of this article is to describe a bioethics consultation service at a pharmaceutical company, to report characteristics of consultations completed by the service over a 6-year period, and to share results of a consultation feedback survey. Methods: Data on the descriptive characteristics of bioethics (...) consultations were collected from 2008 to 2013 and analyzed in Excel 2007. Categorical data were analyzed via the pivot table function, and time-based variables were analyzed via formulas. The feedback survey was administered to consultation requesters from 2009 to 2012 and also analyzed in Excel 2007. Results: Over the 6-year period, 189 bioethics consultations were conducted. The number of consultations increased from five per year in 2008 to approximately one per week in 2013. During this time, the format of the consultation service was changed from a committee-only approach to a tiered approach (tailored to the needs of the case). The five most frequent topics were informed consent, early termination of a clinical trial, benefits and risks, human biological samples, and patient rights. The feedback survey results suggest the consultation service is well regarded overall and viewed as approachable, helpful, and responsive. Conclusions: Pharmaceutical bioethics consultation is a unique category of bioethics consultation that primarily focuses on pharmaceutical research and development but also touches on aspects of clinical ethics, business ethics, and organizational ethics. Results indicate there is a demand for a tiered bioethics consultation service within this pharmaceutical company and that advice was valued. This company's experience indicates that a bioethics consultation service raises awareness about bioethics, empowers employees to raise bioethical concerns, and helps them reason through challenging issues. (shrink)

A Second level Master in “Clinical Bioethics Consultation” has been organized in Italy to offer an opportunity to offer an adequate training to carry out an ethics consultation in different health fields. The master has been promoted and realized by different institutions: Catholic University of Sacred Hearth in Rome, Insubria University in Varese, “Federico II” University in Naples, Lanza Foundation in Padua and the Local Health and Social Care Unit n.7 in Veneto Region. The aim of the master is (...) train ethics consultants to offer help regarding a correct decision, which will take by others. The choice must be as much as possible shared between patient, family and health care team. Ethics consultation can be primarily request by the physicians, nurses and health care staff such as support about a choice that wants to be the most appropriate and to clarify a dilemma between different options. Secondly an ethics consultation can be demand by the patient and the family members to find a clarification about their dilemmas and future choices. Also the administrative staff could ask the consultation, when it need to better explain ad example about a specific clinical case or a question concerned the health policy. (shrink)

The aim of this paper is to present some important contributions to ethics, value theory and political philosophy the former members of the Bioethics Research Group have made. The group was established at the University of Copenhagen in 1992 and was formally dissolved in 1997, but the members continued to work in ethics and political philosophy and set up research groups and centres at four Danish universities. Within four research themes, contributions made over the years are described. (...) Research outputs of the group have, in various ways, served to bring studies of ethics and political philosophy originating in Denmark into the wider international research arena. Members of the group have increasingly included empirical approaches in their research and have thereby participated in the more general “empirical turn” in analytic philosophy. Some members of the group can also be said to have participated in a “pluralist turn”. (shrink)

We present the perspective of a Bioethics Consultation Service operating in an urban hospital in Dayton, Ohio, USA, as it adapted to treating Sars-CoV-2 patients throughout 2020. Since the first case of COVID-19 was reported in Ohio on 9 March 2020, until 1 January 2021, the Bioethics Consultation Service was consulted 60 times, a 22.5% increase from the same period of 2019. The most common diagnoses requiring consultation included end-stage renal disease requiring dialysis, out-of-hospital cardiac arrest, and sepsis. (...) Only 10% of consultations were for patients hospitalized with COVID-19. This is a qualitative analysis of the cases we saw and a discussion of factors that affected our service while adapting to COVID-19 standards of care. (shrink)