The coming of bioethics -- The coming of bioethicists -- "Choices on our conscience": the inauguration of the Kennedy Institute of Education -- "Hello, Dolly": bioethics in the media -- Celebrating bioethics and bioethicists -- Thinking socially and culturally in bioethics -- Reminiscences of observing participants -- Bioethics circles the globe -- Bioethics in France -- The development of bioethics in the Islamic Republic of Pakistan -- The coming of the culture wars to American bioethics.

ABSTRACT This article attempts to show a way in which social science research can contribute in a meaningful and equitable way to philosophical bioethics. It builds on the social science critique of bioethics present in the work of authors such as Renée Fox, Barry Hoffmaster and Charles Bosk, proposing the characteristics of a critical bioethics that would take social science seriously. The social science critique claims that traditional philosophical bioethics gives a dominant role to idealised, rational thought, and tends to (...) exclude social and cultural factors, relegating them to the status of irrelevancies. Another problem is the way in which bioethics assumes social reality divides down the same lines/categories as philosophical theories. Critical bioethics requires bioethicists to root their enquires in empirical research, to challenge theories using evidence, to be reflexive and to be sceptical about the claims of other bioethicists, scientists and clinicians. The aim is to produce a rigorous normative analysis of lived moral experience. (shrink)

The dominant, individualistic understanding of autonomy that features in clinical practice and research is underpinned by the idea that people are, in their ideal form, independent, self-interested and rational gain-maximising decision-makers. In recent decades, this paradigm has been challenged from various disciplinary and intellectual directions. Proponents of ‘relational autonomy’ in particular have argued that people’s identities, needs, interests – and indeed autonomy – are always also shaped by their relations to others. Yet, despite the pronounced and nuanced critique directed at (...) an individualistic understanding of autonomy, this critique has had very little effect on ethical and legal instruments in clinical practice and research so far. In this article, we use four case studies to explore to what extent, if at all, relational autonomy can provide solutions to ethical and practical problems in clinical practice and research. We conclude that certain forms of relational autonomy can have a tangibl... (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)

Contemporary research ethics policies started with reflection on the atrocities perpetrated upon concentration camp inmates by Nazi doctors. Apparently, as a consequence of that experience, the policies that now guide human subject research focus on the protection of human subjects by making informed consent the centerpiece of regulatory attention. I take the choice of context for policy design, the initial prioritization of informed consent, and several associated conceptual missteps, to have set research ethics off in the wrong direction. The aim (...) of this paper is to sort out these confusions and their implications and to offer instead a straightforward framework for considering the ethical conduct of human subject research. In the course of this discussion I clarify different senses of autonomy that have been confounded and present more intelligible justifications for informed consent. I also take issue with several of the now accepted dogmas that govern research ethics. These include: the primacy of informed consent, the protection of the vulnerable, the substitution of beneficence for research's social purpose, and the introduction of an untenable distinction between innovation and research. (shrink)

Theological and secular voices in bioethics have drifted into separate silos. Such a separation results in part from (1) theologians focusing less on conveying ideas in ways that contribute to a pluralistic and public bioethical discourse and (2) the dwindling receptivity of religious arguments within secular bioethics. This essay works against these drifts by putting forward an argument that does not bounce around a religious echo-chamber, but instead demonstrates how insights of Christian anthropology can be meaningfully responsive to secular bioethics’ (...) rightful concerns with inequality and injustice. We offer core concepts from Christian bioethics that encourage dialogue with secular and theological bioethicists. The theologically-grounded concepts, human dignity, sin, and the common good, provide intellectual resources to address major areas of bioethical concern that remain unresolved. (shrink)

Contemporary research ethics policies started with reflection on the atrocities perpetrated upoconcentration camp inmates by Nazi doctors. Apparently, as a consequence of that experience, the policies that now guide human subject research focus on the protection of human subjects by making informed consent the centerpiece of regulatory attention. I take the choice of context for policy design, the initial prioritization of informed consent, and several associated conceptual missteps, to have set research ethics off in the wrong direction. The aim of (...) this paper is to sort out these confusions and their implications and to offer instead a straightforward framework for considering the ethical conduct of human subject research. In the course of this discussion I clarify different senses of autonomy that have been confounded and present more intelligible justifications for informed consent. I also take issue with several of the now accepted dogmas that govern research ethics. These include: the primacy of informed consent, the protection of the vulnerable, the substitution of beneficence for research's social purpose, and the introduction of an untenable distinction between innovation and research. (shrink)

Patient and citizen participation is now regarded as central to the promotion of sustainable health and health care. Involvement efforts create and encounter many diverse ethical challenges that have the potential to enhance or undermine their success. This article examines different expressions of patient and citizen participation and the support health ethics offers. It is contended that despite its prominence and the link between patient empowerment and autonomy, traditional bioethics is insufficient to guide participation efforts. In addition, the turn to (...) a “social paradigm” of ethics in examinations of biotechnologies and public health does not provide an account of values that is commensurable with the pervasive autonomy paradigm. This exacerbates rather than eases tensions for patients and citizens endeavoring to engage with health. Citizen and patient participation must have a significant influence on the way we do health ethics if its potential is to be fulfilled. (shrink)

Abstract“Clinical ethics consultants” have been practicing in the United States for about 50 years. Most of the earliest consultants—the “pioneers”—were “outsiders” when they first appeared at patients' bedsides and in the clinic. However, if they were outsiders initially, they acclimated to the clinical setting and became “insiders” very quickly. Moreover, there was some tension between traditional academics and those doing applied ethics about whether there was sufficient “critical distance” for appropriate reflection about the complex medical ethics dilemmas of the day (...) if one were involved in the decision making. Again, the pioneers deflected concerns by identifying and instituting safeguards to assure professional objectivity in clinical ethics consultation services. One might suggest that in moving inside and establishing normative practices, the pioneer clinical ethics consultants anticipated adoption of their routines and professionalization of the field. (shrink)

Appropriate information and consent has been one of the most intensely discussed topics within the context of biobank research. In parallel to the normative debate, many socio-empirical studies have been conducted to gather experiences, preferences and views of patients, healthy research participants and further stakeholders. However, there is scarcity of literature which connects the normative debate about justifications for different consent models with findings gained in empirical research. In this paper we discuss findings of a limited review of socio-empirical research (...) on patients’ and healthy research participants’ experiences and views regarding consent to biobank research in light of ethical principles for appropriate information and consent. (shrink)

The field of bioethics continues to struggle with the problem of cultural diversity: can universal principles guide ethical decision making, regardless of the culture in which those decisions take place? Or should bioethical principles be derived from the moral traditions of local cultures? Ten Have and Gordijn and Bracanovic defend the universalist position, arguing that respect for cultural diversity in matters ethical will lead to a dangerous cultural relativity where vulnerable patients and research subjects will be harmed. We challenge the (...) premises of moral universalism, showing how this approach imports and imposes moral notions of Western society and leads to harm in non-western cultures. (shrink)

Research ethics education in the biosciences has not historically been a priority for research universities despite the fact that funding agencies, government regulators, and the parties involved in the research enterprise agree that it ought to be. The confluence of a number of factors, including scrutiny and regulation due to increased public awareness of the impact of basic research on society, increased public and private funding, increased diversity and collaboration among researchers, the impressive success and speed of research advances, and (...) high-profile cases of misconduct, have made it necessary to reexamine how the bioscience research community at all levels provides ethics education to its own. We discuss the need to and reasons for making ethics integral to the education of bioscientists, approaches to achieving this goal, challenges this goal presents, and responses to those challenges. (shrink)

Ethics designates a structured process by which important human values and meanings of life are understood and tackled. Therein, the ability to discuss openly and reflect on (aka deliberation) understandings of moral problems, on solutions to these problems, and to explore what a meaningful resolution could amount to is highly valued. However, the indicators of what constitutes a high-quality ethical deliberation remain vague and unclear. This article proposes and develops a pragmatist approach to evaluate the quality of deliberation. Deliberation features (...) three important moments: (1) broadening and deepening the understanding of the situation, (2) envisioning action scenarios, (3) coming to a judgment based on the comparative evaluation of scenarios. In this paper, we propose seven criteria to evaluate ethical deliberations: (1) collaborative diversity, (2) experiential literacy, (3) organization of experiences, (4) reflective capacity to instrumentalize the experiences of others, (5) interactional creativity, (6) openness of agents, (7) quality of the reformulation of scenarios. These criteria are explained and applied to the three moments of deliberation. Based on these criteria, three kinds of outcomes for deliberations are identified and discussed: good ethical deliberations, partial ethical deliberations, bad ethical deliberations. Our proposal will guide researchers and practitioners interested in the evaluation of the quality of ethical deliberations. It provides a reference tool that allows them to identify the possible limitations of a deliberation and to implement actions aimed at correcting these limitations in order to achieve the desired qualitative objectives. (shrink)

Alongside a revival of interest in Thomism in philosophy, scholars have realised its relevance when addressing certain contemporary issues in bioethics. This book offers a rigorous interpretation of Aquinas's metaphysics and ethical thought, and highlights its significance to questions in bioethics. Jason T. Eberl applies Aquinas’s views on the seminal topics of human nature and morality to key questions in bioethics at the margins of human life – questions which are currently contested in the academia, politics and the media such (...) as: When does a human person’s life begin? How should we define and clinically determine a person’s death? Is abortion ever morally permissible? How should we resolve the conflict between the potential benefits of embryonic stem cell research and the lives of human embryos? Does cloning involve a misuse of human ingenuity and technology? What forms of treatment are appropriate for irreversibly comatose patients? How should we care for patients who experience unbearable suffering as they approach the end of life? _Thomistic Principles and Bioethics_ presents a significant philosophical viewpoint which will motivate further dialogue amongst religious and secular arenas of inquiry concerning such complex issues of both individual and public concern. (shrink)

Public health ethics in the future will be distinguished from public health ethics in the past by this new subfield being labeled as such, acknowledged, and called upon for service. Ethical dilemmas have been present throughout the history of public health. The question of whether to force Henning Jacobson to be immunized in 1905 in accordance with the 1902 Massachusetts smallpox vaccination law was one of ethics as well as law. How Thomas Parran, Surgeon General in 1936, chose to respond (...) to a raging syphilis epidemic in the United States in the early part of the 2W century raised considerable moral debate in determining the appropriate public health response for a government? More recently, questions have arisen concerning the appropriate reach of government in controlling HIV banning smoking, or promoting healthy lifestyles. Debates over government infringement, morality, and justice recur throughout the history of public health. (shrink)

The application of neuroimaging technology to the study of the injured brain has transformed how neuroscientists understand disorders of consciousness, such as the vegetative and minimally conscious states, and deepened our understanding of mechanisms of recovery. This scientific progress, and its potential clinical translation, provides an opportunity for ethical reflection. It was against this scientific backdrop that we convened a conference of leading investigators in neuroimaging, disorders of consciousness and neuroethics. Our goal was to develop an ethical frame to move (...) these investigative techniques into mature clinical tools. This paper presents the recommendations and analysis of a Working Meeting on Ethics, Neuroimaging and Limited States of Consciousness held at Stanford University during June 2007. It represents an interdisciplinary approach to the challenges posed by the emerging use of neuroimaging technologies to describe and characterize disorders of consciousness. (shrink)

Relatively few articles discuss the ethical issues that accompany healthcare in rural areas. This article presents and discusses the key findings obtained from multi-method research studies conducted over a 9-year period of time in a multi-state rural area. It challenges the efficacy of current models for bioethics, shows what kinds of ethical issues develop in rural communities, and offers a framework for envisioning resources and approaches that may be more appropriate.

Comparatively little scholarly attention has been given to the question of futility in chronic psychiatric disorders, with the exception of a small body of work on so-called end-stage anorexia nervosa. A review of this literature provides the background for a critical examination of whether the concept of futility has any clinically meaningful, ethically justifiable, and legally defensible application to AN. In this article, the arguments for and against futility judgments in AN are analyzed with special emphasis on determinations of capacity (...) in this serious mental illness. Parallels between the futility disputes in medical and psychiatric disorders, where applicable, will be drawn to further illuminate whether or not the concept that continued psychiatric treatment for AN is ever truly futile. (shrink)

The paper presents an account of suffering as a multi-level phenomenon based on concepts such as mood, being-in-the-world and core life value. This phenomenological account will better allow us to evaluate the hardships associated with dying and thereby assist health care professionals in helping persons to die in the best possible manner. Suffering consists not only in physical pain but in being unable to do basic things that are considered to bestow meaning on one’s life. The suffering can also be (...) related to no longer being able to be the person one wants to be in the eyes of others, to losing one’s dignity and identity. These three types of suffering become articulated by a narrative that holds together and bestows meaning on the whole life and identity of the dying person. In the encounter with the patient, the health-care professional attempts to understand the suffering-experience of the patient in an empathic and dialogic manner, in addition to exploring what has gone wrong in the patient’s body. Matters of physician assisted suicide and/or euthanasia—if it should be legalized and if so under which conditions—need to be addressed by understanding the different levels of human suffering and its positive counterpart, human flourishing, rather than stressing the respect for patient autonomy and no-harm principles, only. In this phenomenological analysis the notions of vulnerability and togetherness, ultimately connecting to the political-philosophical issues of how we live together and take care of each other in a community, need to be scrutinized. (shrink)

Liberal proponents of genetic engineering maintain that developing human germline modification technologies is morally desirable because it will result in a net improvement in human health and well-being. Skeptics of germline modification, in contrast, fear evolutionary harms that could flow from intervening in the human germline, and worry that such programs, even if well intentioned, could lead to a recapitulation of the scientifically and morally discredited projects of the old eugenics. Some bioconservatives have appealed as well to the value of (...) retaining our “given” human biological nature as a reason for restraining the development and use of human genetic modification technologies even where they would tend to increase well-being. In this article, I argue that germline intervention will be necessary merely to sustain the levels of genetic health that we presently enjoy for future generations—a goal that should appeal to bioliberals and bioconservatives alike. This is due to the population-genetic consequences of relaxed selection pressures in human populations caused by the increasing efficacy and availability of conventional medicine. This heterodox conclusion, which I present as a problem of intergenerational justice, has been overlooked in medicine and bioethics due to certain misconceptions about human evolution, which I attempt to rectify, as well as the sordid history of Darwinian approaches to medicine and social policy, which I distinguish from the present argument. (shrink)

This paper examines the historical rise of both cardiopulmonary resuscitation and the do-not-resuscitate order and the wisdom of their continuing status in U.S. hospital practice and policy. The practice of universal presumed consent to CPR and the resulting DNR policy are the products of a particular time and were responses to particular problems. In order to keep the excesses of technology in check, the DNR policies emerged as a response to the in-hospital universal presumed consent to CPR. We live with (...) this historical concretion, which seems to perpetuate a false culture that the patient's wishes must be followed. The authors are critical of the current U.S. climate, where CPR and DNR are viewed as two among a panoply of patient choices, and point to UK practice as an alternative. They conclude that physicians in the United States should radically rethink approaches to CPR and DNR. (shrink)

In this paper, I focus on the concept of human dignity and critically assess whether such a concept, as used in the Universal Declaration on Bioethics and Human Rights, is indeed a useful tool for bioethical debates. However, I consider this concept within the context of the development of emerging technologies, that is, with a particular focus on transhumanism. The question I address is not whether attaching artificial limbs or enhancing particular traits or capacities would dehumanize or undignify persons but (...) whether nonbiological entities introduced into or attached to the human body contribute to the “augmentation” of human dignity. First, I outline briefly how the Universal Declaration on Bioethics and Human Rights uses the concept of dignity. Second, I look at the possibility of a universal bioethics in relation to the concept of human dignity. Third, I examine the concept of posthuman dignity and whether the concept of human dignity as construed in the declaration has any relevance to posthuman dignity. (shrink)

Full-Blooded religion is not acceptable in mainstream bioethics. This article excavates the cultural history that led to the suppression of religion in bioethics. Bioethicists typically fall into one of the following camps. 1) The irreligious, who advocate for suppressing religion, as do Timothy F. Murphy, Sam Harris, and Richard Dawkins. This irreligious camp assumes American Fundamentalist Protestantism is the real substance of all religions. 2) Religious bioethicists, who defend religion by emphasizing its functions and diminishing its metaphysical commitments. Religious defenders (...) empty religion of its theology to present its feel-good functions in a way that is acceptable to the irreligious. However, religion reduced to its functions dissolves into a counter-culture that may counteract materialism but lacks the power to motivate much more. This article criticizes both camps, as both presume Enlightenment myths and consequently neuter religion. Both irreligious and religious bioethicists commonly presume Enlightenment myths about secularity and religion. Secularity is presumed neutral and rational. Religion is presumed divisive and irrational. This myth provides built-in value-judgements; we have already judged secularity as good and religion as bad. Much of the debate over religion in bioethics is arguing over false stereotypes of religion. Consequently, mainstream bioethics neuters religion, while the irreligious are gifted political power to define the field. (shrink)

If ever I summon before me my highest ideals of men and medicine, I find them sprung from the spirit of Osler. —Wilder Penfield, M.D. Neuroethics is a recently coined term that is shaping our cultu...

Background Despite the growth of biomedical research in South Africa, there are few insights into the operation of Research Ethics Committees (RECs) in this setting. We investigated the composition, operations and training needs of health RECs in South Africa against the backdrop of national and international guidelines. Methods The 12 major health RECs in South Africa were surveyed using semi-structured questionnaires that investigated the composition and functions of each REC as well as the operational issues facing committees. Results Health RECs (...) in SA have an average of 16 members and REC members are predominantly male and white. Overall, there was a large discrepancy in findings between under-resourced RECs and well resourced RECs. The majority of members (56%) are scientists or clinicians who are typically affiliated to the same institution as the health REC. Community representatives account for only 8% of membership. Training needs for health REC members varied widely. Conclusion Most major health RECs in South Africa are well organized given the resource constraints that exist in relation to research ethics in developing countries. However, the gender, racial and occupational diversity of most of these RECs is suboptimal, and most RECs are not constituted in accordance with South African guidelines. Variability in the operations and training needs of RECs is a reflection of apartheid-entrenched influences in tertiary education in SA. While legislation now exists to enforce standardization of research ethics review systems, no provision has been made for resources or capacity development, especially to support historically-disadvantaged institutions. Perpetuation of this legacy of apartheid represents a violation of the principles of justice and equity. (shrink)

In this paper I argue that a narrow view of justice dominates the bioethics literature. I urge a broader view. As bioethicists, we often conceive of justice using a medical model. This model focuses attention at a particular point in time, namely, when someone who is already sick seeks access to scarce or expensive services. A medical model asks how we can fairly distribute those services. The broader view I endorse requires looking upstream, and asking how disease and suffering came (...) about. In contrast to a medical model, a social model of justice considers how social determinants affect the health of a population. For example, social factors such as access to clean drinking water, education, safe workplaces, and police protection, profoundly affect risk for disease and early death. I examine one important social determinant of health, health care coverage, to show the limits of a medical model and the merits of a broader view. (shrink)

Objective Futile treatment, which by definition cannot benefit a patient, is undesirable. This research investigated why doctors believe that treatment that they consider to be futile is sometimes provided at the end of a patient9s life. Design Semistructured in-depth interviews. Setting Three large tertiary public hospitals in Brisbane, Australia. Participants 96 doctors from emergency, intensive care, palliative care, oncology, renal medicine, internal medicine, respiratory medicine, surgery, cardiology, geriatric medicine and medical administration departments. Participants were recruited using purposive maximum variation sampling. (...) Results Doctors attributed the provision of futile treatment to a wide range of inter-related factors. One was the characteristics of treating doctors, including their orientation towards curative treatment, discomfort or inexperience with death and dying, concerns about legal risk and poor communication skills. Second, the attributes of the patient and family, including their requests or demands for further treatment, prognostic uncertainty and lack of information about patient wishes. Third, there were hospital factors including a high degree of specialisation, the availability of routine tests and interventions, and organisational barriers to diverting a patient from a curative to a palliative pathway. Doctors nominated family or patient request and doctors being locked into a curative role as the _main_ reasons for futile care. Conclusions Doctors believe that a range of factors contribute to the provision of futile treatment. A combination of strategies is necessary to reduce futile treatment, including better training for doctors who treat patients at the end of life, educating the community about the limits of medicine and the need to plan for death and dying, and structural reform at the hospital level. (shrink)

On February 3, 2010, a “Letter of Concern from Bioethicists,” organized by fetaldex.org, was sent to report suspected violations of the ethics of human subjects research in the off-label use of dexamethasone during pregnancy by Dr. Maria New. Copies of this letter were submitted to the FDA Office of Pediatric Therapeutics, the Department of Health and Human Services (DHHS) Office for Human Research Protections, and three universities where Dr. New has held or holds appointments. We provide a critical appraisal of (...) the Letter of Concern and show that it makes false claims, misrepresents scientific publications and websites, fails to meet standards of evidence-based reasoning, makes undocumented claims, treats as settled matters what are, instead, ongoing controversies, offers “mere opinion” as a substitute for argument, and makes contradictory claims. The Letter of Concern is a case study in unethical transgressive bioethics. We call on fetaldex.org to withdraw the letter and for co-signatories to withdraw their approval of it. (shrink)

Over several decades, ethics and law have been applied to medical education and practice in a way that reflects the continuation during the twentieth century of the strong distinction between facts and values. We explain the development of applied ethics and applied medical law and report selected results that reflect this applied model from an empirical project examining doctors’ decisions on withdrawing/withholding treatment from patients who lack decision-making capacity. The model is critiqued, and an alternative “constitutive” model is supported on (...) the basis that medicine, medical law, and medical ethics exemplify the inevitable entanglement of facts and values. The model requires that ethics and law be taught across the medical education curriculum and integrated with the basic and clinical sciences and that they be perceived as an integral component of medical evidence and practice. Law, in particular, would rank as equal in normative authority to the relevant clinical scientific “facts” of the case, with graduating doctors having as strong a basic command of each category as the other. The normalization of legal knowledge as part of the clinician’s evidence base to be utilized in practice may provide adequate consolation for clinicians who may initially resent further perceived incursions on their traditional independence and discretion. (shrink)

Background There has been debate on whether a global or unified field of bioethics exists. If bioethics is a unified global field, or at the very least a closely shared way of thinking, then we should expect bioethicists to behave the same way in their academic activities anywhere in the world. This paper investigates whether there is a 'global bioethics' in the sense of a unified academic community. Methods To address this question, we study the web-linking patterns of bioethics institutions, (...) the citation patterns of bioethics papers and the buying patterns of bioethics books. Results All three analyses indicate that there are geographical and institutional differences in the academic behavior of bioethicists and bioethics institutions. Conclusion These exploratory studies support the position that there is no unified global field of bioethics. This is a problem if the only reason is parochialism. But these regional differences are probably of less concern if one notices that bioethics comes in many not always mutually understandable dialects. (shrink)

The global development of human embryonic stem cell science and its therapeutic applications are dependent on the nature of its engagement at national and international levels with key cultural values and beliefs concerning the moral status of the early human embryo. This article argues that the political need to reconcile the promise of new health technologies with the cultural costs of scientific advance, dependent in this case on the use of the human embryo, has been met by the evolution of (...) bioethics as a political community, transnational network, and bureaucratic device. Bioethics has become the political means for the creation of a global moral economy where the trading and exchange of values is normalized and legitimated. As a result of such trading, value compromises are produced capable of legitimizing the regulatory policies necessary for maintaining public trust in the new science. (shrink)

Although many of the pioneers of present-day bioethics came from religious and theological backgrounds, the recent controversy about the role of religion in bioethics has elicited much attention. Timothy Murphy would ban religion from bioethics altogether. Much of the ado hinges on conflicting understandings of just what bioethics is and just what religion is. This paper attempts to make more explicit how the fields of bioethics and religion have been understood in this context, and how they should not be understood. (...) We begin by looking at bioethics as a field: its origins, purpose, scope, and its methods. We then examine the notion of religion, looking especially at its importance for bioethics. Humanity is not just Homo sapiens but also Homo religiosus. Religion is more than a code of ethics; it gives insight into many of the foundational matters of bioethics. (shrink)

In this article I explore the underlying political philosophy of public bioethics by comparing it to technocratic authority, particularly the technocratic authority claimed by economists in Mexico in the 1980s and 1990s. I find that public bioethics - at least in the dominant forms - is implicitly designed for and tries to use technocratic authority. I examine how this type of bioethics emerged and has continued. I finish by arguing that, as claims to technocratic authority go, bioethics is in an (...) incredibly weak position, which partly explains why it has never gained the degree of public legitimacy that other technocracies have gained. I conclude by arguing for a "technocracy-lite" orientation for public bioethics. (shrink)

(2003). The Ethics and Governance of Medical Research: What does regulation have to do with morality? New Review of Bioethics: Vol. 1, No. 1, pp. 41-58.

Multiple authorship is becoming increasingly common in bioethics research. There are well-established criteria for authorship in empirical bioethics research but not for conceptual research. It is important to develop criteria for authorship in conceptual publications to prevent undeserved authorship and uphold standards of fairness and accountability. This article explores the issue of multiple authorship in bioethics and develops criteria for determining who should be an author on a conceptual publication in bioethics. Authorship in conceptual research should be based on contributing (...) substantially to: (1) identifying a topic, problem, or issue to study; (2) reviewing and interpreting the relevant literature; (3) formulating, analyzing, and evaluating arguments that support one or more theses; (4) responding to objections and counterarguments; and (5) drafting the manuscript and approving the final version. Authors of conceptual publications should participate substantially in at least two of areas (1)?(5). (shrink)

To promote ethical practices, healthcare managers must understand the ethical challenges encountered by key stakeholders. To characterize ethical challenges in Veterans Administration (VA) facilities from the perspectives of managers, clinicians, patients, and ethics consultants. We conducted focus groups with patients (n = 32) and managers (n = 38); semi-structured interviews with managers (n = 31), clinicians (n = 55), and ethics committee chairpersons (n = 21). Data were analyzed using content analysis. Managers reported that the greatest ethical challenge was fairly (...) distributing resources across programs and services, whereas clinicians identified the effect of resource constraints on patient care. Ethics committee chairpersons identified end-of-life care as the greatest ethical challenge, whereas patients identified obtaining fair, respectful, and caring treatment. Perspectives on ethical challenges varied depending on the respondent's role. Understanding these differences can help managers take practical steps to address these challenges. Further, ethics committees seemingly, are not addressing the range of ethical challenges within their institutions. (shrink)

Empirical moral psychology is sometimes dismissed as normatively insignificant because it plays no decisive role in settling ethical disputes. But that conclusion, even if it is valid for normative ethics, does not extend to bioethics. First, in contrast to normative ethics, bioethics can legitimately proceed from a presupposed moral framework. Within that framework, moral psychology can be shown to play four significant roles: it can improve bioethicists’ understanding of the decision situation, the origin and legitimacy of their moral concepts, efficient (...) options for implementing decisions, and how to change and improve some parts of their moral framework. Second, metaethical considerations suggest that moral psychology may lead to the radical revision of entire moral frameworks and thus prompt the radical revision of entire moral frameworks in bioethics. However, I show that bioethics must either relinquish these radical implications of moral psychology and accept that there are limits to progress in bioethics based on moral psychology or establish an epistemic framework that guides radical revision. (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)

Zur patientenorientierten Behandlung bei nichteinwilligungsfähigen Patienten werden aktuell der Einbezug oder auch die Entscheidung durch ein Ethikkonsil oder klinisches Ethikkomitee (KEK) gefordert. Damit die Entscheidung des Entscheidungsträgers durch das KEK unterstützt werden kann, müssen Zuständigkeiten, Besetzung und Arbeitsweise des Gremiums klar umschrieben sein.

Bioethics can be considered as a topic, an academic discipline, a field of study, an enterprise in persuasion. The historical specificity of the forms bioethics takes is significant, and raises questions about some of these approaches. Bioethics can also be considered as a governance practice, with distinctive institutions and structures. The forms this practice takes are also to a degree country specific, as the paper illustrates by drawing on the author’s UK experience. However, the UNESCO Universal Declaration on Bioethics can (...) provide a starting point for comparisons provided that this does not exclude sensitivity to the socio-political context. Bioethics governance practices are explained by various legitimating narratives. These include response to scandal, the need to restrain irresponsible science, the accommodation of pluralist views, and the resistance to the relativist idea that all opinions count equally in bioethics. Each approach raises interesting questions and shows that bioethics should be studied as a governance practice as a complement to other approaches. (shrink)

Zur patientenorientierten Behandlung bei nichteinwilligungsfähigen Patienten werden aktuell der Einbezug oder auch die Entscheidung durch ein Ethikkonsil oder klinisches Ethikkomitee (KEK) gefordert. Damit die Entscheidung des Entscheidungsträgers durch das KEK unterstützt werden kann, müssen Zuständigkeiten, Besetzung und Arbeitsweise des Gremiums klar umschrieben sein.

The field of bioethics aims to ensure that modern scientific and technological advancements have been primarily developed for the benefits of humankind. This field is deeply rooted in the traditions of Western moral philosophy and socio-political theory. With respect to the view that the practice of bioethics in certain community should incorporate religious and cultural elements, this paper attempts to expound bioethical tradition of the Malay-Muslim community in Malaysia, with shedding light on the mechanism used by the National Fatwa Council (...) to evaluate whether an application of biological sciences is ethical or not. By using the application of the genetically modified food as a case study, this study has found that the council had reviewed the basic guidelines in the main references of shari'ah in order to make decision on the permissibility of the application. The fatwa is made after having consultation with the experts in science field. The council has taken all factors into consideration and given priority to the general aim of shari'ah which to serve the interests of mankind and to save them from harm. (shrink)

There are competing accounts of the birth of bioethics. Despite the differences among them, these accounts share the claim that bioethics was not born in a single disciplinary home or in a single social space, but in numerous, including hospitals, doctors' offices, research laboratories, courtrooms, medical schools, churches and synagogues, and philosophy classrooms. This essay considers the interdisciplinarity of bioethics and the contribution of new disciplines to bioethics. It also explores the implications of interdisciplinarity for bioethics education. As bioethics develops, (...) it will be helpful to identify essential elements in the education of bioethicists and to distinguish between members of other disciplines who make important contributions to bioethics and bioethicists. (shrink)

With few exceptions, the literature on withdrawing and withholding life-saving treatment considers the bare fact of withdrawing or withholding to lack any ethical significance. If anything, the professional guidelines on this matter are even more uniform. However, while no small degree of progress has been made toward persuading healthcare professionals to withhold treatments that are unlikely to provide significant benefit, it is clear that a certain level of ambivalence remains with regard to withdrawing treatment. Given that the absence of clinical (...) benefit means treating patients is not only ethically questionable but also taxing on resources that could meet the needs of others, this ambivalence is troubling. Equally, the enduring ambivalence of professionals might be taken to indicate that the issue warrants further attention. In this paper, we review the academic literature on the ethical equivalence of withdrawing and withholding medical treatment. While we are not in outright disagreement with the arguments presented, we suggest that asserting theoretical and decontextualized claims about the ethical equivalence of withdrawing and withholding life-saving treatment does not fully illuminate the moral questions associated with the relevant clinical realities. We argue that what is required is a broader perspective, one rooted in an understanding that withdrawing and withholding life-saving treatment are different practices, the meanings of which are fully comprehensible only through an appreciation of their place within the practice of healthcare more generally. Such an account suggests that if one is to engage with the inappropriate protraction of life-saving treatment resulting from healthcare professionals’ disinclination to withdraw it, then the differences between these practices should be taken seriously. (shrink)

Hastings Center Report, Volume 51, Issue 5, Page 51-53, September‐October 2021.