Berry, Daniels, and Ladin make a strong argument for discontinuing the use of, “lack of social support,” as an organ transplantation listing criterion. This argument, however, actually leads to conclusions much stronger than those that the authors’ propose: The argument works equally well against using, (1) any “psychosocial” factors at all as a listing criterion, and, (2) any criteria other than factors that directly relate to empirically established medical need, and/or empirically established survival rate. Moreover, while (...) the authors rightly point to a lack of empirical evidence connecting social support to survivability, they neglect mentioning that the empirical literature on social support provides grounds to favor listing persons who seem to, sadly, lack a social support system. (shrink)

Shortages in the number of donated organs after death and the growing number of end-stage organ failure patients on waiting lists call for looking at alternatives to increase the number of organs that could be used for transplantation purposes. One option that has led to a legal and ethical debate is to have regulated markets in human organs. Opponents of a market in human organs offer different arguments that are mostly founded on contingent factors that can be adjusted. However, (...) some authors have asked the question whether we still have a reason to believe that there is something wrong with offering human organs for sale for transplantation purposes, even if the circumstances under which the practice takes place are improved. One prominent argument regarding this appeals to the notion of human dignity. It is argued that organ selling violates human dignity. This paper presents a systematic discussion of dignity-based arguments in the organ selling debate, and then develops a social account of dignity. It is argued that allowing the practice of organ selling inherently runs the risk of promoting the notion that some persons have less worth than others and that persons have a price, which is incompatible with dignity. The approach is defended against possible objections and it is shown that it can capture the notion that autonomy is linked to human dignity in important ways, while dignity at the same time can constrain the autonomous choices of persons with regards to certain practices. (shrink)

Transplantation programs commonly rely on clinicians’ judgments about patients’ social support (care from friends or family) when deciding whether to list them for organ transplantation. We examine whether using social support to make listing decisions for adults seeking transplantation is morally legitimate, drawing on recent data about the evidence-base, implementation, and potential impacts of the criterion on underserved and diverse populations. We demonstrate that the rationale for the social support criterion, based in the (...) principle of utility, is undermined by its reliance on tenuous evidence. Moreover, social support requirements may reinforce transplant inequities, interfere in patients’ personal relationships, and contribute to biased and inconsistent listing procedures. As such, accommodating the needs of patients with limited social support would better balance ethical commitments to equity, utility, and respect for persons in transplantation. We suggest steps for researchers, transplantation programs, and policymakers to improve fair use of social support in transplantation. (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)

Edmund Pellegrino claims that medical ethics must be derived from a perception of the patient's damaged humanity, rather than from the self-imposed duties of professionals. This essay explores the meaning and examines the challenges to this patient-centered ethic. Social scientific and bioethical interpretations of medicine constitute one kind of challenge. A more pervasive challenge is the ascendancy of managed care, and especially investor-owned, for-profit managed care. A list of questions addressed to patients, physicians and organizations is offered as (...) one means of assessing this threat and moving toward morally trustworthy relationships. (shrink)

BackgroundNational guidelines require programmes use subjective assessments of social support when determining transplant suitability, despite limited evidence linking it to outcomes. We examined how transplant providers weigh the importance of social support for kidney transplantation compared with other factors, and variation by clinical role and personal beliefs.MethodsThe National survey of the American Society of Transplant Surgeons and the Society of Transplant Social Work in 2016. Using a discrete choice approach, respondents compared two hypothetical patient profiles (...) and selected one for transplantation. Conditional logistic regression estimated the relative importance of each factor; results were stratified by clinical role and beliefs.ResultsFive hundred and eighy-four transplant providers completed the survey. Social support was the second most influential factor among transplant providers. Providers were most likely to choose a candidate who had social support, always adhered to a medical regimen, and had a 15 years life expectancy with transplant. Psychosocial providers were more influenced by adherence and quality of life compared with medical/surgical providers, who were more influenced by candidates' life expectancy with transplant. For providers concerned with avoiding organ waste, social support was the most influential factor, while it was the least influential for clinicians concerned with fairness.ConclusionsSocial support is highly influential in listing decisions and may exacerbate transplant disparities. Providers’ beliefs and reliance on social support in determining suitability vary considerably, raising concerns about transparency and justice. (shrink)

PHOTO ID 121339257© Designer491| Dreamstime.com ABSTRACT When physicians use their clinical knowledge and skills to advance the well-being of their patients, there may be apparent conflict between patient autonomy and physician beneficence. We are skeptical that today’s medical ethics education adequately fosters future physicians’ commitment to beneficence, which is both rationally defensible and fundamentally consistent with patient autonomy. We use an ethical dilemma that was presented to a group of third-year medical students to examine how ethics education might (...) be causing them to give undue deference to autonomy, thereby undermining their commitment to beneficence. INTRODUCTION The right of patients to choose which treatments they prefer is rooted in today’s social mores and taught as a principle of medical ethics as respect for autonomy. Yet, when physicians use their clinical knowledge and skills to advance the well-being of their patients, there may be a conflict between patient autonomy and physician beneficence. We are skeptical that today’s medical ethics education adequately fosters a commitment to beneficence, which is both rationally defensible and fundamentally consistent with patient autonomy. I. An Ethical Dilemma The impetus for this paper arose when students who were completing their third clinical year discussed a real-life ethical dilemma. A middle-aged man developed a pulmonary hemorrhage while on blood thinners for a recently placed coronary stent. The bleeding was felt to be reversible, but the patient needed immediate intubation or he would die. The cardiologist was told that the patient previously expressed to other physicians that he never wanted to be intubated. However, the cardiologist made the decision to intubate the patient anyway, and the patient eventually recovered.[1] Students were asked if they believed that the cardiologist had acted ethically. Their overwhelming response was, “No, the patient should have been allowed to die.” We looked into how students applied ethical reasoning to conclude that this outcome was ethically preferred. To explore how the third-year clinical experience might have formed the students’ judgment, we presented the same case to students who were just beginning their third year. Their responses were essentially uniform in recommending intubation. While there is likely more than one reasonable view in this case, we agree with the physician and the younger medical students that intubation was the ethically appropriate decision and will present an argument for it. But first, we explain the reasoning behind the more advanced medical students’ decision to choose patient autonomy at the expense of beneficence. II. Medical Ethics Education and the Priority of Autonomy Beauchamp and Childress’s Principles of Biomedical Ethics, first published in 1979 and now in its 8th edition, is a significant part of the formal ethics education in medical school.[2] Students learn an ethical decision-making approach based on respect for four ethical principles: autonomy, beneficence, nonmaleficence, and justice. While Beauchamp and Childress officially afford no prima facie superiority to any principle, the importance of respect for patient autonomy has increased through the editions of their book. For example, early editions of their book opposed the legalization of physician-assisted death compared to recent editions that defended it.[3] As another example, Beauchamp and Childress make paternalism harder to justify by adding an autonomy-protecting condition to the list of conditions for acceptable paternalism.[4] Authority, they contend, need not conflict with autonomy—provided the authority is autonomously chosen.[5] “The main requirement,” they write, “is to respect a particular patient’s or subject’s autonomous choices, whatever they may be.[6] In the principlism of Beauchamp and Childress, autonomy now seems to have a kind of default priority.[7] However, the bioethics discourse has strong counternarratives, noting some movement to elevate the role of beneficence and to respect the input of stakeholders, including the family and the healthcare team. Ethics education achieves particular relevance in the third clinical year when students become embedded in the care of patients and learn from what has been called the informal curriculum. They observe how attending physicians approach day-to-day ethical problems at the patient’s bedside. In this context, students observe the importance of informed consent for serious treatments or invasive procedures, a practice that highlights the principle of patient autonomy. In both the formal and informal curriculum, medical students observe how, in the words of Paul Wolpe, “patient autonomy has become the central and most powerful principle in ethical decision-making in American medicine.”[8] In short, students appear to learn a deference for patient autonomy. This curricular shift in favor of autonomy coincides with legal developments that protect patients’ rights and decision-making with respect to their healthcare choices. The priority of autonomy in medicine benefits patients by reflecting their choices and, in some cases, their fundamental liberty. III. The Practice of Medicine and the Commitment to Beneficence There are many critiques of the dominant place that autonomy has in biomedical ethics,[9] especially considering that autonomy seems to be biased toward individualistic, Western, and somewhat American culture-driven values.[10] In addition, many bioethical dilemmas are cast as a conflict between autonomy and beneficence. Our point is that medical students bring to their study of medicine a commitment to beneficence that seems to be suppressed by practical ethics education. We think this commitment is rationally defensible and should be nurtured. It is striking that young medical students have a pre-reflective commitment to beneficence at all. For, as we mentioned, it is not just medicine but Western culture generally that prioritizes autonomy in settling ethical dilemmas. In wanting to act for the good of others (rather than simply agreeing to what others want), physicians are already swimming somewhat against the cultural tide.[11] However, doing so makes sense, given the nature of medicine and the profession of healing. When prospective medical students are asked why they wish to become physicians, the usual answer is some variation on caring for the sick and preventing disease. It is unlikely that a reason to become a physician is to respect a patient’s autonomy. It would be easy to dismiss medical students’ commitment to beneficence as a mere intuition and contrary to a more reasoned and deliberative approach. Beauchamp and Childress seem to minimize the value of physician intuition, stating that justifications for certain procedures are “…supported by good reasons. They need not rest merely in intuition or feeling.”[12] Henry Richardson writes that “situational or perceptive intuition…leaves the reasons for decision unarticulated.”[13] We think this is a crude and rather thin way of understanding intuition. Some bioethicists have defended intuition as essential to the practice of medicine and not something opposed to reason.[14] In the case we describe, we believe the ethical justifications s for the patient’s intubation are fundamentally sound: the patient did not have a “do not intubate” order written in the chart, the emergency intubation had not been foreseen, so the patient did not have the opportunity to consent to or reject intubation; the patient had consented to the treatment for his cardiac disease so his consent for intubation could have been assumed;[15] and the consequences of respecting his autonomy did not justify allowing him to die.[16] While it is possible to have more than one reasonable view on this case, we think the case for beneficence is strong and certainly should not be dismissed out of hand. We do not deny that if a patient makes a clearly documented, well-informed decision to forgo intubation that this decision ought to be respected by the physician (even if the physician disagrees with the patient’s decision). But, in this situation, as in many others in the practice of medicine, the patient’s real wishes and preferences are not well-articulated in advance. There are many cases where a physician acts based on what she believes the patient, or the surrogate, would want, sometimes in situations that do not allow much time for reflection. An example might be resuscitation of a newborn at the borderline of viability. In their ethics education, beneficence would mean acting first to save a life. If the patient or surrogate makes an informed decision to the contrary, a beneficent physician respects that autonomous decision. In the case presented, the patient expressed gratitude to the cardiologist when extubated. But what if he had expressed anger at the physician for violating his autonomy? There are those who could argue that not only was intubation ethically wrong but that the cardiologist put himself in legal jeopardy by his actions (especially if there had been a written refusal applicable to the specific situation). In the example we use, we point out that the cardiologist may not have escaped a lawsuit if the patient had died without intubation. His family, when hearing the circumstances, may have sued for failure to act and dereliction of the cardiologist’s duty to save him. Beyond a potential legal challenge for either action or inaction, there is an overriding ethical question the cardiologist had to address: what course would be most satisfying to his conscience? Would he rather allow a patient to die for fear of recrimination, or act to save his life, regardless of the personal consequences? In the absence of real knowledge about the patient’s considered wishes, it is most reasonable to err on the side of promoting patient well-being. A physician’s commitment to beneficence is not necessarily a way of undermining a patient’s autonomy. In acting for the patient's good, physicians are also acting on what it is reasonable to believe a patient (or most patients, perhaps) would want, which is obviously connected to what a patient does want. Pellegrino and Thomasma argue that beneficence includes respect for a patient’s autonomy since “the best interests of the patient are intimately linked with their preferences.”[17] Instead of conceptualizing ethical dilemmas in medicine as conflicts between autonomy and beneficence, it is possible that medical schools could teach students that truly practicing beneficence is a way of valuing patient autonomy, especially when the patient’s wishes are not specific to the situation and are not clearly expressed. CONCLUSION It is important for students and practicing physicians to understand the principle of respect for patient autonomy in a pluralistic society that demands personal self-determination. However, the role of the physician as a beneficent healer should not be diminished by this respect for autonomy. Respecting a patient’s autonomy is grounded in and manifested by physician beneficence.[18] That is, seeking what is good for the patient can only be good if it respects their personhood and dignity. We propose that a commitment to beneficence, incipient in young medical students, should be developed over time with their other clinical reasoning skills. Such a commitment need not be sacrificed on the altar of patient autonomy. Beneficence needs greater relative moral weight with students as they proceed in their ethics education. - [1] S. Jauhar, “When Doctors Need to Lie,” New York Times, February 22, 2014, https://www.nytimes.com/2014/02/23/opinion/sunday/when-doctors-need-to-lie.html. [2] T. L. Beauchamp and James F. Childress, Principles of Biomedical Ethics, 8th ed. (New York, NY: Oxford University Press, 2019). [3] Louise A. Mitchell, “Major Changes in Principles of Biomedical Ethics,” The National Catholic Bioethics Quarterly 14, no. 3 (2014): 459–75, https://doi.org/10.5840/ncbq20141438. [4] Tom L. Beauchamp and James F. Childress, Principles of Biomedical Ethics, 8th ed. (New York, NY: Oxford University Press, 2019), 238. [5] Beauchamp and Childress, 103. [6] Beauchamp and Childress, p. 108. [7] For other accounts that prioritize autonomy, see e.g. Allen E. Buchanan and Dan W. Brock, Deciding for Others: The Ethics of Surrogate Decision Making (Cambridge University Press, 1989), 38–39; R Gillon, “Ethics Needs Principles—Four Can Encompass the Rest—and Respect for Autonomy Should Be ‘First among Equals,’” Journal of Medical Ethics 29, no. 5 (October 2003): 307–12, https://doi.org/10.1136/jme.29.5.307. For examples of critiques of these accounts, see footnote 9. [8] P. R. Wolpe, “The Triumph of Autonomy in American Bioethics: A Sociological View,” in Bioethics and Society: Constructing the Ethical Enterprise, p. 43. [9] V. A. Entwistle et al., “Supporting Patient Autonomy: The Importance of Clinician-Patient Relationships,” Journal of General Internal Medicine 25, no. 7 (July 2010): 741–45; C. Foster, Choosing Life, Choosing Death: The Tyranny of Autonomy in Medical Ethics and Law, 1st ed. (Oxford ; Hart Publishing, 2009); O. O’Neill, Autonomy and Trust in Bioethics, The Gifford Lectures, University of Edinburgh 2001 (Cambridge, UK: Cambridge University Press, 2002). [10] P. Marshall and B. Koenig, “Accounting for Culture in a Globalized Bioethics,” The Journal of Law, Medicine & Ethics: A Journal of the American Society of Law, Medicine & Ethics 32, no. 2 (2004): 252–66; R. Fan, “Self-Determination vs. Family-Determination: Two Incommensurable Principles of Autonomy,” Bioethics 11, no. 3–4 (1997): 309–22. [11] Arguments stressing the importance of beneficence, as ours does here, certainly approach paternalistic arguments. We set aside the complex issue of paternalism for purposes of this paper and simply note that the principle of beneficence as such does not say anything specifically about acting against the patient’s will. In the case study that focuses this paper, we do not believe the patient’s will or wishes were clearly indicated. [12] Beauchamp and Childress, Principles of Biomedical Ethics, p. 20, see note 2 above. [13] H. S. Richardson, “Specifying, Balancing, and Interpreting Bioethical Principles,” The Journal of Medicine and Philosophy: A Forum for Bioethics and Philosophy of Medicine 25, no. 3 (January 1, 2000): 285–307, p. 287. [14] H. D. Braude, Intuition in Medicine a Philosophical Defense of Clinical Reasoning (Chicago ; University of Chicago Press, 2012). [15] R. Kukla, “Conscientious Autonomy: Displacing Decisions in Health Care,” The Hastings Center Report 35, no. 2 (2005): 34–44. [16] M. Schermer, The Different Faces of Autonomy: Patient Autonomy in Ethical Theory and Hospital Practice, vol. 13, Library of Ethics and Applied Philosophy (Dordrecht: Springer Netherlands, 2002). [17] E. D. Pellegrino and D. C. Thomasma, For the Patient’s Good - the Restoration of Beneficence in Health Care (New York, NY: Oxford University Press, 1988), p. 29. [18] Pellegrino and Thomasma, For the Patient’s Good. (shrink)

Medical therapy, research and technology enable us to make our bodies, or parts of them, available to others in an increasing number of ways. This is the case in organ, tissue, egg and sperm donation as well as in surrogate motherhood and clinical research. Bringing together leading scholars working on the ethical, social and cultural aspects of such bodily exchanges, this cutting-edge book develops new ways of understanding them. Bodily Exchanges, Bioethics and Border Crossing both probes the (...) established giving and selling frameworks for conceptualising bodily exchanges in medicine, and seeks to develop and examine another, less familiar framework: that of sharing. A framework of sharing can capture practices that involve giving up and giving away part of one's body, such as organ and tissue donation, and practices that do not, such as surrogacy and research participation. Sharing also recognizes the multiple relationalities that these exchanges can involve and invites inquiry into the context in which they occur. In addition, the book explores the multiple forms of border crossing that bodily exchanges in medicine involve, from the physical boundaries of the body to relational borders - as can happen in surrogacy - to national borders and the range of ethical issues that these various border-crossings can give rise to. Engaging with anthropology, sociology, philosophy, and feminist and postcolonical perspectives, this is an original and timely contribution to contemporary bioethics in a time of increasing globalization. It will be of use to students and researchers from a range of humanities and social science backgrounds as well as medical and other healthcare professionals with an interest in bioethics. (shrink)

Bioethics represents a dramatic revision of the centuries-old professional ethics that governed the behavior of physicians and their relationships with patients. This venerable ethics code was challenged in the years after World War II by the remarkable advances in the biomedical sciences and medicine that raised questions about the definition of death, the use of life-support systems, organ transplantation, and reproductive interventions. In response, philosophers and theologians, lawyers and social scientists joined together with physicians and scientists to (...) rethink and revise the old standards. Governments established commissions to recommend policies. Courts heard arguments and legislatures passed laws. This book is the first broad history of the growing field of bioethics. Covering the period 1947-1987, it examines the origin and evolution of the debates over human experimentation, genetic engineering, organ transplantation, termination of life-sustaining treatment, and new reproductive technologies. It assesses the contributions of philosophy, theology, law and the social sciences to the expanding discourse of bioethics. Written by one of the field's founders, The Birth of Bioethics is based on extensive archival research into sources that are difficult to obtain and on interviews with many of the leading figures in the moral debates in medicine. A very readable and comprehensive account of the evolution of bioethics, this book stresses the history of ideas but does not neglect the social and cultural context and the people involved. It will serve the information needs of philosophers, ethicists, social historians, and everyone interested in the origins of some of today's most hotly debated issues. (shrink)

One of the criteria used by many transplant centers in assessing psychosocial eligibility for solid organ transplantation is social support. Yet, social support is a highly controversial requirement that has generated ongoing debate between ethicists and clinicians who favor its consideration (i.e., utility maximizers) and those who object to its use on equity grounds (i.e., equity maximizers). The assumption underlying both of these approaches is that social support is not a commodity that can (...) be purchased in the marketplace. This essay argues for the reconceptualization of social support as a product that can—and should—be purchased for transplant candidates to render them eligible for transplant. (shrink)

This qualitative social scientific study explores professional texts of healthcare ethics to understand the ways in which ethical professionalism in medicine and nursing are culturally constructed in Finland. Two books in ethics, published by Finnish national professional organizations—one for nurses and one for physicians—were analyzed with the method of critical discourse analysis. Codes of ethics for each profession were also scrutinized. Analysis of the texts sought to reveal what is taken for granted in the texts as well as to (...) speculate what appeared to be relegated to the margins of the texts or left entirely invisible. Physicians’ ethics was discovered to emphasize objectivity and strong group membership as a basis for ethical professionalism. The discourses identified in the physicians’ ethics guidebook were universal ethics, reductionism, non-subjectivity, and threat. Nursing ethics was discovered to highlight reflectivity as its central focus. This idea of reflectivity was echoed in the identified discourses: local ethics, enlightenment, and moral agency. The analysis exposes a cultural gap between the ethics discourses of medicine and nursing. More work is needed to bridge ethics discourses in Finland in a way that can support healthcare professionals to find common ground and to foster inclusivity in ethical dialogue. Further development of bioethical practices is suggested as a potential way forward. (shrink)

Background Increasing social pluralism adds to the already existing variety of heterogeneous moral perspectives on good care, health, and quality of life. Pluralism in social identities is also connected to health and care disparities for minoritized patient (i.e. care receiver) populations, and to specific diversity-related moral challenges of healthcare professionals and organizations that aim to deliver diversity-responsive care in an inclusive work environment. Clinical ethics support (CES) services and instruments may help with adequately responding to these diversity-related (...) moral challenges. However, although various CES instruments exist to support healthcare professionals with dealing well with morally challenging situations in healthcare, current tools do not address challenges specifically related to moral pluralism and intersectional aspects of diversity and social justice issues. This article describes the content and developmental process of a novel CES instrument called the Diversity Compass. This instrument was designed with and for healthcare professionals to dialogically address and reflect on moral challenges related to intersectional aspects of diversity and social justice issues that they experience in daily practice. Methods We used a participatory development design to develop the Diversity Compass at a large long-term care organization in a major city in the Netherlands. Over a period of thirteen months, we conducted seven focus groups with healthcare professionals and peer-experts, carried out five expert interviews, and facilitated four meetings with a community of practice consisting of various healthcare professionals who developed and tested preliminary versions of the instrument throughout three cycles of iterative co-creation. Results The Diversity Compass is a practical, dialogical CES instrument that is designed as a small booklet and includes an eight-step deliberation method, as well as a guideline with seven recommendations to support professionals with engaging in dialogue when they are confronted with diversity-related moral challenges. The seven recommendations are key components in working toward creating an inclusive and safe space for dialogue to occur. Conclusions The Diversity Compass seeks to support healthcare professionals and organizations in their efforts to facilitate awareness, moral learning and joint reflection on moral challenges related to diversity and social justice issues. It is the first dialogical CES instrument that specifically acknowledges the role of social location in shaping moral perspectives or experiences with systemic injustices. However, to make healthcare more just, an instrument like the Diversity Compass is not enough on its own. In addition to the Diversity Compass, a systemic and structural approach to social justice issues in healthcare organizations is needed in order to foster a more inclusive, safe and diversity-responsive care and work environment in health care organizations. (shrink)

Background: It is often claimed that a regulated kidney market would significantly reduce the kidney shortage, thus saving or improving many lives. Data are lacking, however, on how many people would consider selling a kidney in such a market. Methods: A survey instrument, developed to assess behavioural dispositions to and attitudes about a hypothetical regulated kidney market, was given to Swiss third-year medical students. Results: Respondents’ median age was 23 years. Their socioeconomic status was high or middle. 48 considered (...) selling a kidney in a regulated kidney market, of whom 31 would sell only to overcome a particularly difficult financial situation. High social status and male gender was the strongest predictor of a disposition to sell. 32 of all respondents supported legalising a regulated kidney market. This attitude was not associated with a disposition to sell a kidney. 5 respondents endorsed a market and considered providing a kidney to a stranger if and only if paid. 4 of those 5 would sell only under financial duress. Conclusions: Current understanding of a regulated kidney market is insufficient. It is unclear whether a regulated market would result in a net gain of kidneys. Most possible kidney vendors would only sell in a particularly difficult financial situation, raising concerns about the validity of consent and inequities in the provision of organs. Further empirical and normative analysis of these issues is required. Any calls to implement and evaluate a regulated kidney market in pilot studies are therefore premature. (shrink)

A central question of this chapter is how we can relate the unique ethos of Japan to the ways that influences of international bioethics, civil rights and legal reforms have shifted medical research in Japan from the legacy of the structured paternalism and impunity that allowed abuses to be committed by medical researchers in the World War II era, including in Unit 731 and in medical schools in Japan, to contemporary research agendas and policies. Throughout the twentieth (...) century, Japan has been a centre of research and innovation. The pro-technology attitudes still exist in current Japan, with the evolution of bioethics. Although we can trace the origins of bioethics in Japan back through millennia, with the Ainu indigenous practices and relationships to nature, the sophisticated hierarchical relationships expressed in the seventh century A.D. book the Kojiki, the conversion of forest to rice paddies, emergence of an integrated religious system including Shintoism and Buddhism, and the sophisticated class system supported by linguistics and social relationships, this chapter would argue that one of the most influential influence for this question is the Samurai tradition. This tradition values both autonomy and informed choice, while also allowing the legacy of tolerance of the elite classes to make decisions that may sacrifice some persons for the greater good. While principles of solidarity and social justice are a solid basis for universal health insurance they also allow sacrifices when necessary. Informed consent is now widely accepted, and bioethics is part of a transition which is transforming Japanese society from a paternalistic society to an individualistic one. Among the issues that will be used to illustrate the situation, are the functioning of research ethics committees, large gene bank and epidemiological projects, organ transplantation, truth telling, euthanasia and the public health measures such as mask wearing in the current COIVD-19 pandemic. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Bioethics and Natural Law: The Relationship in Catholic TeachingJ. Bryan Hehir (bio)In the discipline of Catholic moral theology, bioethics (traditionally described as medical ethics) has held a major place. The systematic development of bioethics has drawn principally upon a natural law ethic, supported by broader religious arguments. The purpose of this essay is to examine the status and role of natural law in Catholic teaching as it bears (...) upon bioethics.Natural Law and Catholic TheologyThe role of natural law in Catholic theology is rooted in a prior conviction about the complementary relationship of faith and reason. The conviction finds initial expression in patristic authors, then preeminently in Thomas Aquinas and consistently in modern papal teaching of the twentieth century. Flowing from this conviction, as a premise of Catholic theology and teaching, is the [End Page 333] notion that a second source of moral wisdom exists along side the revealed wisdom of the Hebrew and Christian scriptures. This second source of wisdom is the product of rational reflection upon human nature and experience. In the tradition of natural law ethics (expressed in a plurality of versions), such reflection affirms an objective moral order, accessible to reason and based upon a conception of the person as both spiritual and social. The spiritual nature, expressed in the capacity for reflection and free choice, is the foundation of the natural law ethic, providing the human person a unique status in the created order. The social nature of the person locates each human being in a framework of social relationships, articulated in a complex of rights and duties and finding expression in three basic communities: the family, civil society, and the human community.The fully developed framework of a natural law ethic has five dimensions. It yields a theory of society, a doctrine of the state, a charter of duties and rights, a jurisprudence, and an applied ethic. At each level of this framework, the natural law ethic is contested by other contemporary philosophical positions. In this article, space demands that stress must be placed on the natural law affirmations without trying to engage the critics.The centrality of the social nature of the person yields a theory of society that is organic in character, laying strong emphasis on the social fabric of existence. Hence the theory has traditionally emphasized both order and justice more strongly than claims of freedom. The doctrine of the state, in contemporary natural law arguments, supports a limited yet activist state, limited by constitutional restraints and human rights claims, yet activist in its conception of a broad range of social obligations, particularly to the poor. The charter of rights affirms a range of both political-civil and socio-economic rights; the traditional natural law emphasis on a structure of duties has been complemented in the twentieth century by its stress on the role of human rights. The jurisprudential theory of natural law has been its most prominent aspect; it affirms a moral grounding for civil law, but distinguishes precisely between the comprehensive nature of moral law and the more limited scope of civil law, restricted to the maintenance of public order in society. Finally, the natural law framework finds expression in Catholic teaching in three areas of applied ethics: social ethics (civil society and international relations), sexual ethics, and bioethics.History and StatusWhile a natural law ethic has been a staple of Catholic social and bioethical teaching, it has not held similar status in the wider arena of contemporary philosophical or theological ethics. Through the 1950s, therefore, one could find a strong consensus supporting natural law within the Catholic community and ongoing debates within the wider world of philosophy and bioethics. Since the 1960s, any description of the status and role of natural law must consider the debates within Roman Catholicism itself about the role and status of natural law. [End Page 334]It is possible to distinguish two stages of these internal arguments in the church. In the period from 1960 to 1990, three events in Catholicism directly influenced the standing of a natural law position: John XXIII’s encyclical Pacem In Terris (1963), Paul XI’s encyclical Humanae Vitae (1968), and the teaching of... (shrink)

There are not enough solid organs available to meet the needs of patients with organ failure. Thousands of patients every year die on the waiting lists for transplantation. Yet there is one currently available, underutilized, potential source of organs. Many patients die in intensive care following withdrawal of life-sustaining treatment whose organs could be used to save the lives of others. At present the majority of these organs go to waste.In this paper we consider and evaluate a range of (...) ways to improve the number and quality of organs available from this group of patients. Changes to consent arrangements (for example conscription of organs after death) or changes to organ donation practice could dramatically increase the numbers of organs available, though they would conflict with currently accepted norms governing transplantation.We argue that one alternative, Organ Donation Euthanasia, would be a rational improvement over current practice regarding withdrawal of life support. It would give individuals the greatest chance of being able to help others with their organs after death. It would increase patient autonomy. It would reduce the chance of suffering during the dying process. We argue that patients should be given the choice of whether and how they would like to donate their organs in the event of withdrawal of life support in intensive care.Continuing current transplantation practice comes at the cost of death and prolonged organ failure. We should seriously consider all of the alternatives. (shrink)

In the film Never Let Me Go, clones are forced to donate their organs anonymously. As a work of fiction, this film can be regarded as a negotiation of limited agency, since the clones are depicted as vulnerable individuals. Thereby, it evokes a confrontation with underprivileged positions in technocratic societies, encouraging the audience to take the perspective of the marginalised. The clones are situated in ‘privileged deprivation’; from the audience’s point of view, they are unable to evolve into autonomous agents—but (...) from their own perspective within the dystopian system, they are still ‘privileged’. In this paper, we analyse the depiction of the clones’ personal development. Further, we examine references to bioethical aspects as well as technologies that affect the human body both on a micro and macro level—cloning and its impact on the human embryo and organ donation practised on the full-grown human body. We argue that this film as a reference for the discussion in popular culture focuses on individuals who do not profit from modern technical progress or do not have enough agency to refuse it. To make this point, we analyse the film’s fictional story, set in a form of alternate history, as a negotiation of a historical context which brings out the idea of neglected voices. (shrink)

_The Blackwell Guide to Medical Ethics_ is a guide to the complex literature written on the increasingly dense topic of ethics in relation to the new technologies of medicine. Examines the key ethical issues and debates which have resulted from the rapid advances in biomedical technology Brings together the leading scholars from a wide range of disciplines, including philosophy, medicine, theology and law, to discuss these issues Tackles such topics as ending life, patient choice, selling body parts, resourcing and (...) confidentiality Organized with a coherent structure that differentiates between the decisions of individuals and those of social policy. (shrink)

The growing potential of biomedical technologies has increasingly been associated with discussions surrounding the ethical aspects of the new technologies in different societies. Advances in genetics, stem cell research and organ transplantation are some of the medical issues that have raised important ethical and social issues. Special attention has been paid towards moral ethics in Islam and medical and religious professions in Iran have voiced the requirement for an emphasis on ethics. In the last decade, great (...) strides have been made in biomedical ethics, especially in the field of education, research and legislation. In this article, contemporary medical ethics in Iran, and the related moral philosophy, have been reviewed in brief and we have discussed some of the activities in the field of medical ethics that have been carried out in our country within recent years. These activities have included the establishment of the National and Regional Committees for Medical Research Ethics and the production of national codes of ethics in biomedical research in the 1990s and the introduction of a comprehensive strategic plan for medical ethics at the national level in 2002. This paper will discuss these issues, along with the production, in 2005, of the Specific National Ethical Guidelines for Biomedical Research. (shrink)

In pluralist societies, stakeholders in healthcare may have different experiences of and moral perspectives on health, well-being, and good care. Increasing cultural, religious, sexual, and gender diversity among both patients and healthcare professionals requires healthcare organizations to address these differences. Addressing diversity, however, comes with inherent moral challenges; for example, regarding how to deal with healthcare disparities between minoritized and majoritized patients or how to accommodate different healthcare needs and values. Diversity statements are an important strategy for healthcare organizations to (...) define their normative ideas with respect to diversity and to establish a point of departure for concrete diversity approaches. We argue that healthcare organizations ought to develop diversity statements in a participatory and inclusive way in order to promote social justice. Furthermore, we maintain that clinical ethicists can support healthcare organizations in developing diversity statements in a more participatory way by fostering reflective dialogues through clinical ethics support. We will use a case example from our own practice to explore what such a developmental process may look like. We will critically reflect on the procedural strengths and challenges as well as on the role of the clinical ethicist in this example. (shrink)

The debate concerning whether to legalize and regulate the global market in human organs is hindered by a lack of adequate bioethical language. The author argues that the preferential option for the poor, a theological category, can provide the grounding for an inductive moral epistemology adequate for reforming the use of culturally Western bioethical language. He proposes that the traditional, Western concept of bioethical coercion ought to be modified and expanded because the conditions of the market system, as viewed from (...) the perspective of organ vendors systemically deprived of access to sufficient resources, are sufficiently exploitative as to diminish the possibility of these vendors giving informed consent. Moreover, empirical studies conducted by professionals in medicine, sociology, psychiatry, economics, and medical anthropology continue to contribute support to the growing interdisciplinary consensus that functionally coercive structural factors exert the most significant influence upon a vendor's decision to sell an organ within any market, regardless of legality or degree of regulation. Therefore any proposal to legalize and regulate the organ market remains patently unethical because doing so would likely function to constrain further the agency of poor potential vendors. (shrink)

There exists a serious shortage of organs for transplantation in China, more so than in most Western countries. Confucianism has been commonly used as the cultural and ethical reason to explain the reluctance of Chinese and other East-Asian people to donate organs for medical purposes. It is asserted that the Confucian emphasis on xiao (filial piety) requires individuals to ensure body intactness at death. However, based on the original texts of classical Confucianism and other primary materials, we refute this (...) popular view. We base our position on the related Confucian norms of filial piety and ren (humaneness, humanity or benevolence), the tension between differentiated love and universal love, and belief in the goodness of human nature. In light of this, we argue that the Confucian ethical outlook actually calls for organ donation at an individual level, and supports an opt-out (presumed consent) system at the level of social policy. Furthermore, because the popular view is based on a number of dominant but misleading modes of thinking about cultural differences, our revisionist account of Confucian moral duties regarding organ donation has implications for developing a more adequate transcultural and global bioethics. These will be discussed and expanded upon. (shrink)

Despite the majority opinion of Muslim jurists that organ donation is permitted in Sharia, surveys indicate continuing resistance by lay Muslims, especially to donating organs following death. Pakistan, a country with 165 million Muslims, currently reliant on live donors, is considering steps to establish deceased donor programs which will require public acceptance and support. This article analyzes the results of in-depth interviews with 105 members of the public focusing on opinions and knowledge about juristic rulings regarding kidney donations, (...) donor-family dynamics in deceased donation decisions, and attitudes towards buying kidneys. The objective was to determine the influence if any of cultural and religious values, and norms of traditional family structures and kinships, on decisions to donate. Study participants view donation of kidneys, particularly from the deceased, through a different lens from that used by jurists and physicians, one that also does not conform to familiar paradigms defining ethical organ donation. A socially modulated understanding of Islam passed down the generations, and longstanding family-centric norms, shape the moral worldview of many rather than academic juristic rulings or non-contextual concepts of autonomy and rights. The results of this study also highlight that medical science may be universal but its application occurs within particularities of cultural and religious values, social constructs of the self and its relationship with others, and different ways in which humans comprehend illness, suffering, and death. These findings are of relevance both to transplant related professionals and bioethicists involved with this field. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Bioethics Commissions: Town Meetings with a “Blue, Blue Ribbon”Susan Cartier Poland (bio)Town meetings are characteristic of New England. In theory, a quorum of registered voters in a small municipality meets annually to decide local public policy. In fact, special interests and the town bureaucracy control the meeting.Like a town meeting, a commission (or committee or council) comes into being, whether on an ad hoc or permanent basis, to direct (...) a government function. Bioethics commissions specialize in one area: the intersection of public policy with developments, either real or anticipated, in the basic and applied sciences.That specialization of commissions carries over into the selection of the members. More often than not commission members are appointed on the basis of expertise in a specific area. Although some commissions are still made up entirely of one kind of expert, usually medical, the majority of these government bodies seek breadth between the fields of law, religion, ethics, and science (including medicine and the social sciences).In the words of Mrs. Rigenbach, the law clerk to Chief Judge Carl B. Rubin of the United States District Court for the Southern District of Ohio, selection of persons “knowledgeable in the field” constitutes a “blue, blue ribbon” jury. In contrast, a “blue ribbon” jury is composed of those persons having “the greatest amount of formal education” (In re Richardson-Merrill, Inc. (Bendectin litigation), 624 Federal Supplement 1212 at 1217 (1985)). The problem with persons knowledgeable in the field is that their minds may have already been made up. For a jury, this is a disaster; for a bioethics commission, this directs and shapes the research, investigation, and discussion, or, in short, it makes for more efficient decision making.For this Scope Note, the definition of commission begins with the Bioethicsline description of its index term “advisory committees” as committees or commissions set up to advise government bodies on public policy. Furthermore, a commission [End Page 91] (or committee) receives government funding and support in exchange for its expertise in research, investigation, reporting, and recommendations.Six functions served by bioethics commissions have been clearly and succinctly described by LeRoy Walters (Commissions and Bioethics. Journal of Medicine and Philosophy 14 (4): 363–68, August 1989). The functions are: (1) to legitimize action; (2) to delay action or resolution; (3) to identify duplication; (4) to be representative; (5) to do research and find facts; and (6) to provide education and support (pp. 364–65). Since 1989, however, another government function has moved to the forefront. Instead of remaining within the legislative arena, government commissions serve the judiciary as well, in cases involving complex and technical questions. The now defunct Law Reform Commission of Canada recognized this use when it included in its annual reports a section on its “Influence on Law Reform through Judicial Decisions.”In mid-1997, the United States Supreme Court in its consolidated cases on assisted suicide used extensively the writings from a state commission, the New York State Task Force on Life and the Law, to support its rationale. Not only did the Court make use of the Task Force’s work, but in so doing the Court extended the efforts of the commission beyond its jurisdiction of New York into another jurisdiction on the opposite coast, Washington state. Furthermore, although the commission was chartered by one state, through the federal court system, its influence became national.Outside the U.S., the United Nations recently adopted its first bioethics text on the ethics of genetic research, and Canada is reworking its human research guidelines into a single set of guidelines that will apply to research in both the natural sciences and the social sciences.This Scope Note attempts to compile for the researcher and the reference librarian those commissions, existing and defunct, that have addressed bioethics issues. Only one other such attempt is known to the author, an Office of Technology Assessment [OTA] Background Paper, Biomedical Ethics in U.S. Public Policy (1993). Due to space limitations, not all publications could be listed; the selections included represent the range of topics from a particular group or the more frequently cited sources. Future updates of this compilation are planned, so please notify the... (shrink)

The chronic worldwide lack of organs for transplantation and the continuing improvement of strategies for in situ organ preservation have led to renewed interest in elective non-therapeutic ventilation of potential organ donors. Two types of situation may be eligible for elective intensive care: patients definitely evolving towards brain death and patients suitable as controlled non-heart beating organ donors after life-supporting therapies have been assessed as futile and withdrawn. Assessment of the ethical acceptability and the risks of these (...) strategies is essential. We here offer such an ethical assessment using the four principles of medical ethics of Beauchamp and Childress applying them in their broadest sense so as to include patients and their families, their caregivers, other potential recipients of intensive care, and indeed society as a whole. The main ethical problems emerging are the definition of beneficence for the potential organ donor, the dilemma between the duty to respect a dying patient's autonomy and the duty not to harm him/her, and the possible psychological and social harm for families, caregivers other potential recipients of therapeutic intensive care, and society more generally. Caution is expressed about the ethical acceptability of elective non-therapeutic ventilation, along with some proposals for precautionary measures to be taken if it is to be implemented. (shrink)

This article describes the exclusion of public expressions of religion from the history of bioethics during recent decades. It offers a proposal to include the public church for the purpose of gaining donations of vital organs for transplantation. I also include a brief discussion of theological support and practical suggestions for such a program.

The blinkered debate on organ donation neglects the widening gap between the developed and developing worldsThe current debate about organ donation and the associated advocacy for selling kidneys, while laudable for its concern about increasing the ability to save the lives of some people with chronic renal failure, is characterised by four features that locate the reasoning process within a narrow and inadequate framework. Firstly, the focus on saving lives is myopic, with the lives of the most privileged (...) in the world receiving most attention. Secondly, the debate is firmly set within a value system in which market values dominate. Thirdly, health is considered from a highly individualistic perspective with little understanding of the importance of social solidarity in health. Finally, a constricted moral vocabulary is used to discuss the ethics of organ sales.MYOPIC CONCERN FOR SAVING LIVESMany articles making pleas for more organs begin by describing the number of people waiting for donated organs, the number of donors who could give organs but are not doing so, and how many lives could be saved if more organs could be made available. Great concern is expressed about a few thousand …. (shrink)

Growing ties to private industry have prompted many to question the impartiality of academic bioethicists who receive financial support from for-profit corporations in exchange for ethics-related services and research. To the extent that corporate sponsors may view bioethics as little more than a way to strengthen public relations or avoid potential controversy, close ties to industry may pose serious threats to professional independence. New sources of support from private industry may also divert bioethicists from pursuing topics of greater (...) social importance, such as the needs of medically underserved communities. To inform ongoing debates about the financing of bioethics and its transparency to those concerned about potential sources of bias, we examined funding disclosures appearing in original research reports in major bioethics journals. Reviewing research published over a 15-year period, we found little evidence that for-profit corporations are influencing bioethics research directly. Instead, we found evidence that a great number of organizations, both public and private, support bioethics research. These findings suggest that worries about the cooption of bioethics research by a few interested stakeholders are greatly overstated and undersupported by available data. (shrink)

Despite the majority opinion of Muslim jurists that organ donation is permitted in Sharia, surveys indicate continuing resistance by lay Muslims, especially to donating organs following death. Pakistan, a country with 165 million Muslims, currently reliant on live donors, is considering steps to establish deceased donor programs which will require public acceptance and support. This article analyzes the results of in‐depth interviews with 105 members of the public focusing on opinions and knowledge about juristic rulings regarding kidney donations, (...) donor‐family dynamics in deceased donation decisions, and attitudes towards buying kidneys. The objective was to determine the influence if any of cultural and religious values, and norms of traditional family structures and kinships, on decisions to donate. Study participants view donation of kidneys, particularly from the deceased, through a different lens from that used by jurists and physicians, one that also does not conform to familiar paradigms defining ethical organ donation. A socially modulated understanding of Islam passed down the generations, and longstanding family‐centric norms, shape the moral worldview of many rather than academic juristic rulings or non‐contextual concepts of autonomy and rights. The results of this study also highlight that medical science may be universal but its application occurs within particularities of cultural and religious values, social constructs of the self and its relationship with others, and different ways in which humans comprehend illness, suffering, and death. These findings are of relevance both to transplant related professionals and bioethicists involved with this field. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Kennedy Institute of Ethics Journal 13.1 (2003) 53-64 [Access article in PDF] Incentives for Providing Organs Patricia Milmoe McCarrick and Martina Darragh After a contentious debate at its 2002 annual meeting, the American Medical Association's House of Delegates voted to endorse the opinion of its Council on Ethical and Judicial Affairs that the impact of financial incentives on organ donation should be studied (Josefson 2002). The shortage (...) of organs for transplantation has been an ongoing problem for more than 20 years. In June1981, Representative Philip Crane (R-IL) introduced legislation in the U.S. House of Representatives proposing a $25,000 income tax deduction and a $25,000 estate tax exclusion for donating an organ (Tax Incentives 1981). Still the National Organ Transplant Act enacted in October 1984 prohibited the offering of any "valuable consideration" in return for organs (United States 1984).The developments of a legal market for tissues in the United States and a black market for organs around the world have raised the question of whether donation without compensation is the only ethically viable option. Some critics of the current system claim reliance on donation actually promotes a black market in organs (Kaserman and Barnett 2002, p. 38; Palmer 1999, p. 36). In addition, a new set of compensation issues has arisen as living kidney donor transplantations begin to rival those performed with cadaveric organs (United States 2001).As a result, current suggestions for incentives go far beyond the traditional death benefit payment to include such ideas as medals of honor for donors, reimbursement for funeral expenses, exchange programs for organ donation, and special medical insurance for living organ donors. Numerous bills introduced into the 107th Congress have proposed such incentives (Delmonico et al. 2002.) In October 2002, the U.S. Department of Health and Human Services awarded $5.2 million in grants to study both clinical and behavioral interventions for increasing organ donations that do not involve incentives. The inspiration for some of the funded proposals comes from the successes of Spain's social services and the United Kingdom's clinical administration of organ procurement programs (Robeznieks 2002). [End Page 53]With a nod to evidence-based medicine, the underlying concern expressed in much of the current literature is that no idea for increasing the supply of organs should be discounted before it is studied. This bibliography provides a short introduction to the range of opinions expressed on the issue of incentives for providing organs.al-Mousawi, M.; Samhan, M.; al-Mezairee I.; Razzak, M.A.; and Khawari, F. Cadaver Organ Procurement in Kuwait. Transplantation Proceedings 31 (8): 3375-76, 1999.The authors describe a protocol that significantly increased cadaveric organ donation and credit it with fostering the expansion of an organ sharing program among the Arab Gulf states. Developed by Kuwaiti neurologists and anesthetists after a continuing education course on transplantation, the protocol places a special emphasis on the role of local transplant coordinators who facilitate the investigation of brain death cases by neurologists.Arnold, Robert; Bartlett, Steven; Bernat, James; et al. [Ethics Committee of the American Society of Transplant Surgeons] Financial Incentives for Cadaver Organ Donation: an Ethical Reappraisal. Transplantation 73 (8): 1361-67, 27 April 2002.To prepare for proposed studies of financial incentives for organ donation, the American Society of Transplant Surgeons convened a panel to develop a methodology for evaluating the ethics of such research. Comprised of organ procurement organization executives, physicians, surgeons, and ethicists, the panel generated a list of nine criteria for use in judging any incentives proposal. While opposed to direct payment or tax incentives for organ donation, a majority of the members support funeral expense reimbursement or charitable contributions as incentives that would not violate or undermine the ideal of altruism.Cameron, J. Stewart, and Hoffenberg, Raymond. The Ethics of Organ Transplantation Reconsidered: Paid Organ Donation and the Use of Executed Prisoners as Donors. Kidney International 55 (2): 724-32, February 1999.After reviewing arguments for and against payment for organ procurement, the authors apply these arguments to the specific case of obtaining organs from executed... (shrink)

The purpose of this essay is to show how, on a wide variety of issues, Rabbi Moshe Feinstein broke new ground with the established Orthodox rabbinic consensus and blazed a new trail in Jewish medical ethics. Rabbi Feinstein took power away from the rabbis and let patients decide their treatment, he opened the door for a Jewish approach to palliative care, he supported the use of new technologies to aid in reproduction, he endorsed altruistic living organ donation and (...) recognized brain death (thus laying the groundwork for Orthodox Jewish acceptance of heart transplantation), he downplayed the value of social worth in triage decisions, and was a fierce defender of the rights of the fetus. I develop broader theological principles from Rabbi Feinstein's ethical positions and compare them to those of his Jewish and Christian contemporaries. (shrink)

Background: Allocation of scarce organs for transplantation is ethically challenging. Artificial intelligence (AI) has been proposed to assist in liver allocation, however the ethics of this remains unexplored and the view of the public unknown. The aim of this paper was to assess public attitudes on whether AI should be used in liver allocation and how it should be implemented. Methods: We first introduce some potential ethical issues concerning AI in liver allocation, before analysing a pilot survey including online responses (...) from 172 UK laypeople, recruited through Prolific Academic. Findings: Most participants found AI in liver allocation acceptable (69.2%) and would not be less likely to donate their organs if AI was used in allocation (72.7%). Respondents thought AI was more likely to be consistent and less biased compared to humans, although were concerned about the “dehumanisation of healthcare” and whether AI could consider important nuances in allocation decisions. Participants valued accuracy, impartiality, and consistency in a decision-maker, more than interpretability and empathy. Respondents were split on whether AI should be trained on previous decisions or programmed with specific objectives. Whether allocation decisions were made by transplant committee or AI, participants valued consideration of urgency, survival likelihood, life years gained, age, future medication compliance, quality of life, future alcohol use and past alcohol use. On the other hand, the majority thought the following factors were not relevant to prioritisation: past crime, future crime, future societal contribution, social disadvantage, and gender. Conclusions: There are good reasons to use AI in liver allocation, and our sample of participants appeared to support its use. If confirmed, this support would give democratic legitimacy to the use of AI in this context and reduce the risk that donation rates could be affected negatively. Our findings on specific ethical concerns also identify potential expectations and reservations laypeople have regarding AI in this area, which can inform how AI in liver allocation could be best implemented. (shrink)

Growing ties to private industry have prompted many to question the impartiality of academic bioethicists who receive financial support from for-profit corporations in exchange for ethics-related services and research. To the extent that corporate sponsors may view bioethics as little more than a way to strengthen public relations or avoid potential controversy, close ties to industry may pose serious threats to professional independence. New sources of support from private industry may also divert bioethicists from pursuing topics of greater (...) social importance, such as the needs of medically underserved communities. To inform ongoing debates about the financing of bioethics and its transparency to those concerned about potential sources of bias, we examined funding disclosures appearing in original research reports in major bioethics journals. Reviewing research published over a 15-year period, we found little evidence that for-profit corporations are influencing bioethics research directly. Instead, we found evidence that a great number of organizations, both public and private, support bioethics research. These findings suggest that worries about the cooption of bioethics research by a few interested stakeholders are greatly overstated and undersupported by available data. (shrink)

Photo by Tingey Injury Law Firm on Unsplash ABSTRACT The coverage of healthcare costs allegedly brought about by people’s own earlier health-adverse behaviors is certainly a matter of justice. However, this raises the following questions: justice for whom? Is it right to take people’s past behaviors into account in determining their access to healthcare? If so, how do we go about taking those behaviors into account? These bioethical questions become even more complex when we consider them in the context of (...) a commitment to publicly funded, universal healthcare coverage. INTRODUCTION Healthcare coverage of lifestyle-related conditions is certainly a matter of justice. However, this raises the following justice-related question: Is it right to consider people’s past behaviors in determining their access to healthcare? If so, the methods of taking those behaviors into account must be fair and justifiable. This bioethical question becomes even more complex when we consider it in the context of a commitment to publicly funded, universal healthcare coverage. This paper takes an old, classic debate, evaluates newer approaches, and offers an argument favoring a combined approach which alters the liberal-egalitarian solution to account for social justice. ANALYSIS l. Causes of Disease If healthcare coverage were universal, irrespective of socioeconomic status and lifestyle, people would contribute to the cost of remedying the lifestyle-induced health problems of others. In the West, lifestyle-related diseases are burdensome.[1] This paper approaches this concern from a western lens that incorporates both a European tradition of “social safety nets” and an American tradition of personal freedoms. By taking such an approach, solutions to the consequences of one’s past behavior burdening others must consider an individual’s personal freedom to choose to act as he or she wishes, with the distributive social and economic equality of the many. The concept of disease caused by lifestyle and diet is proven. Many health conditions include behavioral risk factors. Multi-pack smoking increases the risk of chronic lung disease, while obesity increases the risk of type 2 diabetes. Inattention to high blood pressure, high cholesterol, and a lack of exercise leads to increased risks of coronary artery disease.[2] While poor lifestyle choices certainly influence these conditions, their causes are multifactorial, and it is difficult to say that any single string of poor choices led to their development. In a scenario where two men excessively eat fast food for 20 years, several discrete factors impact whether any of them might suffer an ischemic-embolic stroke or not. Genetics, circumstances, and activity will also contribute to outcomes. ll. Alcohol-Related End-Stage Liver Disease One paper suggests that alcohol-related end-stage liver disease (ARESLD) differs from other multifactorial disorders as alcohol alone causes the disease.[3] It justifies attributing personal responsibility to patients with ARESLD because the condition develops only after the cumulative effects of large quantities of alcohol consumed from years to decades.[4] However, the paper undermines its position by admitting that even the susceptibility to becoming an alcoholic has some degree of genetic predisposition.[5] Given the extreme scarcity of donor livers, some patients may be prioritized over others on the transplant waiting list. Since donor livers cannot be given to everyone, transplanting a liver into an alcoholic may result in death for competing candidates whose liver disease was not their fault. All else being equal, if bioethicists avoid claiming moral deficiency or judgment, those with apparently self-inflicted ARESLD will not be deprived of treatment but will have a lower priority for transplant.[6] In contrast, another position suggests that it is often difficult to define what behaviors are punishable as these are largely personal and value-laden.[7] Still, people do not support using their own resources to support the consequences of others’ poor choices, no matter how objective.[8] In democratic societies, one must take into consideration community morals and values.[9] Even if we were to punish people for their health-adverse behaviors, we could not logistically employ the vigorous and sustained efforts necessary to determine whose actions are morally weak.[10] lll. The Liberal-Egalitarian Proposal One past argument proposes a liberal-egalitarian solution to manage personal responsibility for so-called “lifestyle diseases.”[11] This Rawlsian system combines the European-style “social safety net” commitment to social and economic equality with the American liberal notion of pluralist toleration and personal freedoms. This idealized system aims to hold people responsible for their choices rather than the consequences to mitigate the downside of blaming those who might not be blameworthy. The approach avoids determining the questionable nature of luck and personal responsibility for health outcomes, fairness in the distribution of economic burden, and the intrusiveness required to practically determine who acts in a morally wrong and health-adverse way. The liberal-egalitarian model, a theory of distributive justice, has two facets: the liberal principle that people should be held accountable for their choices and the egalitarian principle that people who make the same choices should have the same outcomes.[12] This model attempts to fuse responsibility with equity by seeking to reward good behavior and tax bad behavior rather than punish the consequences of the action and navigate who deserves treatment. For instance, the hospital bedside is not the appropriate place to introduce responsibility for one’s health outcomes.[13] This appeals to the reality that, at that time, discerning the true causes of disease was not plausible and to humanity in avoiding a heartless and cruel approach. An argument in favor of the liberal-egalitarian model considers its method of implementation. This approach assumes that the healthcare system treats all individuals regardless of their choices or ability to cover costs. The liberal-egalitarian model also assumes that a certain adverse health condition is related, statistically speaking, to the consumption of a certain good and that good can be taxed. As such, it proposes to tax the consumption of that good to finance the collective burden which arises from that good’s consumption rather than require individuals to pay for their own treatment. In the example of ARESLD, the recommended solution would be taxing all alcohol. While a systematic infrastructure is not explicit, there is the implication that a per-unit tax can be imposed on alcohol so the total tax revenue would make up for the additional healthcare costs due to consumption.[14] Upholding the principle that all people who make the same choices should face the same costs, all consumers of alcohol would pay the same tax, regardless of factors such as genetic predisposition to alcoholism, lifestyle, or expected cost of treatment. Upholding the principle of individual responsibility, this model does not deny treatment to anyone, neutralizing factors outside that individual’s control by imposing the tax ex-ante. Other people are not burdened by those who consume the good. People who consume alcohol face a burden proportional to the amount consumed. This tax-based implementation is justified so long as the tax is not prohibitively high for the average consumer. Further, the model mitigates concerns over the intrusiveness of ascribing morality to health-adverse behaviors. lV. Moral and Social Arguments Against the Liberal-Egalitarian Position Arguments against the liberal-egalitarian model concerns its many assumptions. First, this model assumes that consumption of such goods is directly related to the health outcome and that these goods can be taxed.[15] Certain people genetically predisposed to alcoholism would be predisposed to consume more alcohol. The model falls short when applied to scenarios where health outcomes are not consumption-based, such as engaging in unsafe sex or abstaining from healthy lifestyle choices like exercise. Second, some might argue that the liberal-egalitarian model fails to remain neutral. Residual moral judgments tied to consumption choices introduce non-neutrality. Although taxation in free societies is determined by democratic procedures rather than by individuals in the healthcare system, moral and value-based judgments will be implicit in deciding what behaviors are taxable, such as the purchase of cigarettes. Third, the liberal-egalitarian model fails to determine whether one’s behavior is autonomous, as socio-cultural-economic factors may influence it and behavior is more a product of society, peer pressure, or income. Those also may reflect systemic inequalities. Therefore, this model, which rewards, or taxes based solely on decisions, regardless of their consequences and motivations, fails to consider that a person’s decisions may not be completely autonomous. V. Libertarian Arguments Against the Liberal-Egalitarian Model a. State Intrusiveness as Counter to the Liberal-Egalitarian Model Last, there is a libertarian worry that if the state guarantees universal healthcare coverage to all people, the state will have to become highly intrusive and investigate people’s morals.[16] At least one-third of all disease burden in North America, Europe, and the Asia-Pacific is attributable to lifestyle measures such as tobacco smoking, alcohol consumption, high cholesterol, and obesity.[17] With these various lifestyles, it is not likely to agree on what conduct to tax or condemn.[18] The fine-toothed comb required to determine whether each citizen has been engaging in these behaviors would intrude on daily life and personal freedom. Libertarians champion the argument that impractical intrusiveness would result from universal healthcare, and such a degree of intrusiveness would likely be universally unacceptable.[19] The liberal-egalitarian model mitigates the libertarian worry about state intrusiveness as it does not involve prying into one’s life and choices other than taxing goods. A liberal state should ideally be neutral to how people decide to live their lives. In all, libertarians can rest assured that the liberal-egalitarian tax-based model, through its ex-ante implementation, will require no prying state eyes. States that provide universal healthcare coverage and wish to condemn certain misconduct do not need to become overly intrusive to carry out measures to hold individuals accountable. b. Fairness Another libertarian worry regarding the guarantee of universal healthcare coverage in the context of lifestyle-driven diseases is that the public will be burdened unfairly with covering others’ ill-advised mistakes or bad luck. An ideal system to address this worry would link treatment or payment for treatment with whatever behavior caused that need.[20] The distribution of burdens should be linked to how different individuals contributed to the creation of those burdens. Applied to health policy, we should ask how the need for a certain treatment arose when determining how to distribute its cost.[21] The liberal-egalitarian model aspires to hold individuals responsible for their choices, not for the consequences of such choices. This model significantly mitigates the libertarian worry over unfair burdens for covering other people’s mistakes or social conditions, which lead to those bad outcomes, by ensuring to not burden others with any of the costs for the treatment of people who decide to engage in certain health-adverse behaviors. The aforementioned taxation-based system would only tax those who also engage in the health-adverse behavior through consumption, and that tax directly pays for the necessary collective treatment. As such, those who do not consume the good are not involved with the payment scheme, while those who do consume the good are responsible for payment in a matter proportional to the amount of the good they have consumed. Vl. Universal Coverage Taking a step back, one should consider whether these worries regarding the coverage of apparently self-inflicted health conditions in the context of universal healthcare are worthwhile issues. One perspective raises what is called the culturally imagined objection — an idea erroneously held by many that sick people, especially those who are poor and uneducated, bring these illnesses upon themselves due to poor decision-making and irresponsible risk-taking.[22] This perspective critiques the uniquely American view that, since individuals are free to choose their lifestyles, they should bear the costs of their lifestyle.[23] Taking this argument further, some (perhaps the strongly libertarian) would say that the poor health status among many individuals is the price individuals must pay for their American way of life and the liberty and freedom to live as they wish. However, people should not completely punish individuals for their health-adverse behaviors because these choices are largely pre-determined by a person’s socioeconomic influences.[24] The outcomes from these allegedly ill-advised behaviors, which largely affect poorer people, are not just poor behavior but rather a public health crisis. Perhaps the state and its people should take collective responsibility and cover the costs of treatment for those health outcomes without question, as a form of public service. Rather than worrying about accountability and taxing bad behavior or intrusiveness into personal decisions, some might argue that people need to collectively take responsibility for reducing the overarching systemic inequalities and covering the associated treatment costs as a measure of public health. Vll. Proposed Solution Given the strengths of the liberal-egalitarian model and taking into account libertarian and social justice-oriented objections, an ideal solution for the coverage of lifestyle-related health problems needs to consider the complex relationship between a person’s behaviors and their apparent health outcomes. It must consider how society as a whole passes judgment on behaviors and how to take into account that many health-adverse decisions are not truly autonomous decisions, as various genetic and socioeconomic factors influence them. An ideal solution combines the liberal-egalitarian tax-based model with the social justice concerns of universal coverage. Whatever the cost for the treatment of medical issues resulting in part or entirely from lifestyle and diet, taxes collected from spending associated with the behavior (like the purchase of alcohol, junk food, and cigarettes) ex-ante should fund 50 percent of the cost of treatment, while the universal healthcare taxation scheme should include the other 50 percent. Such a system would provide an incentive to avoid the purchases that can lead to unhealthy consumption and make healthier choices, slightly punish and discourage such purchases through taxation, yet not overly punish people whose outcomes may have more to do with socioeconomic factors and genetics. Adding public responsibility demonstrates acknowledgement that health care is in the public interest and can mitigate public health inequalities. This solution would fuse personal responsibility with the public responsibility of state-sponsored social improvement while ensuring that all people have fair access to necessary treatment, no matter their ability to pay. CONCLUSION The 50-50 system this paper proposes reflects both justice and personal responsibility in covering healthcare costs allegedly brought about by people’s own health-adverse behaviors. By allocating tax revenue from consumption that contributes or even alone causes poor health outcomes, such a system incorporates personal responsibility. By using general tax revenue for health care, such a system would meet the libertarian requirement of providing care without any moral investigation of past behaviors and the social justice consideration of providing health care to those who may have unwittingly ventured into ill-health due to systemic injustice, socioeconomics, or genetics. - [1] Cappelen, A. W. (2005). Responsibility in health care: A liberal egalitarian approach. Journal of Medical Ethics, 31(8), 476–480. https://doi.org/10.1136/jme.2004.010421 [2] Moss, A. H. (1991). Should alcoholics compete equally for liver transplantation? JAMA: The Journal of the American Medical Association, 265(10), 1295–1298. https://doi.org/10.1001/jama.1991.03460100097032 [3] Moss, p. 1295-1298. [4] Moss, p. 1296. [5] Moss, p. 1295-1298. [6] Moss, p. 1295-1298. [7] Cohen, C. IS THIS SUPPOSED TO BE COHEN AND BENJAMIN (1991). Alcoholics and liver transplantation. JAMA: The Journal of the American Medical Association, 265(10), 1299–1301. https://doi.org/10.1001/jama.1991.03460100101033 [8] Cohen, p. 1299-1301. [9] Moss, p. 1297. [10] Cohen, p. 1300. [11] Cappelen, p. 478-480. [12] Cappalen, p. 478-480. [13] Cappelen, p.479. [14] Cappelen, p. 479. [15] Cappelen, p. 479 [16] Cohen, p. 1301. [17] Cappelen, p. 478. [18] Cohen, p. 1299-1301. [19] Cohen, p. 1301. [20] Cappelen, p. 476-480. [21] Cappelen, p. 476-480. [22] Kawachi, I. (2005). Why the United States is not number one in Health. Healthy, Wealthy, and Fair, 18–33. https://doi.org/10.1093/acprof:oso/9780195170665.003.0013 [23] Kawachi, p. 18-33. [24] Kawachi, p. 18-33. (shrink)

Military employees face all sorts of moral dilemmas in their work. The way they resolve these dilemmas—how they decide to act based on their moral deliberations—can have a substantial impact both on society and on their personal lives. Hence, it makes sense to support military employees in dealing with these dilemmas. Military organizations already support their personnel by adopting compliance‐based approaches that focus, for instance, on enforcing moral rules. At the same time, however, they struggle to develop value‐based (...) approaches that could foster moral learning by improving employees' understanding of personal values, others' values, and their responsibility for others. Consequently, military employees are not adequately supported in their ethical decision‐making when confronted with complex situations. To address this issue, drawing on a design research approach, we develop and evaluate the use of a value‐based reflection tool to support military employees with their moral decision‐making. The design and evaluation of the value‐based reflection tool were informed by five semistructured interviews, notes on 45 joint reflection meetings with trainers, and evaluation notes of 755 participants. Our findings suggest the value‐based reflection tool is a promising way to foster actors' moral competence in organizational settings by triggering the social mechanisms of reflection, empathy, and psychological safety. This study is the first to illustrate that value‐based ethics support can complement compliance‐based ethics support in a military organization. Furthermore, it demonstrates design research's potential to develop actionable knowledge for ethics support practices in organizations. (shrink)

Because the number of organs available for transplantation does not meet the needs of potential recipients, some have proposed that a potentially effective way to increase registration is to offer a self‐benefit incentive that grants a 'preferred status' or some degree of prioritization to those who register as potential donors, in case they might need organs. This proposal has elicited an ethical debate on the appropriateness of such a benefit in the context of a life‐saving medical procedure. In this (...) paper we review arguments and ethical concerns raised by scholars, and studies of views of members of the public regarding the prioritization incentive system. We also report on our study of the views of those involved in organ transplant and of other medical professionals in Israel, as over half a decade ago Israel implemented a prioritization incentive system. Bioethicists propose that key stakeholders' views can provide additional arguments and perspectives on controversial issues. Proponents justify the prioritization incentive drawing mainly on arguments related to its potential effectiveness, reciprocity and fairness. Opponents point to the fact that registering is not binding and not an actual donation, and raise concerns regarding equity, autonomy and gaming the system. Ethical concerns raised by the practitioners in the study were examined in light of scholars' arguments and actual registration and donation data. Practitioners involved in transplantation raised ethical concerns corresponding to those raised by scholars as well as additional concerns. They also challenged proponents' assumptions regarding the utility of the incentive system from their own experience and argued that proponents obscure the meaning of reciprocity. (shrink)

Background We present and discuss the results of a Norwegian survey of medical doctors' views on potential ethical dilemmas in professional practice. Methods The study was conducted in 2015 as a postal questionnaire to a representative sample of 1612 doctors, among which 1261 responded. We provided a list of 41 potential ethical dilemmas and asked whether each was considered a dilemma, and whether the doctor would perform the task, if in a position to do so. Conceptually, dilemmas arise because (...) of tensions between two or more of four doctor roles: the patient’s advocate, a steward of societal interests, a member of a profession and a private individual. Results 27 of the potential dilemmas were considered dilemmas by at least 50% of the respondents. For more than half of the dilemmas, the anticipated course of action varied substantially within the professional group, with at least 20% choosing a different course than their colleagues, indicating low consensus in the profession. Conclusions Doctors experience a large range of ethical dilemmas, of which many have been given little attention by academic medical ethics. The less-discussed dilemmas are characterised by a low degree of consensus in the profession about how to handle them. There is a need for medical ethicists, medical education, postgraduate courses and clinical ethics support to address common dilemmas in clinical practice. Viewing dilemmas as role conflicts can be a fruitful approach to these discussions. (shrink)

In 1999, the Bangladesh government introduced the Human Organ Transplantation Act allowing organ transplants from both brain-dead and living-related donors. This Act approved organ donation within family networks, which included immediate family members such as parents, adult children, siblings, uncles, aunts, and spouses. Subsequently, in January 2018, the government amended the 1999 Act to include certain distant relatives, such as grandparents, grandchildren, and first cousins, in the donor lists, addressing the scarcity of donors. Nobody, without these relatives, (...) is legally permitted to donate organs for transplantation in Bangladesh. The focus of this study was to investigate who should donate organs for transplantation in Bangladesh. The ethnographic fieldwork revealed that potential donors are not always available to immediate family members, and even when they are, they might be medically unsuitable for transplants. These considerations influenced the government in the revision of the Act. Secondly, the findings of the study suggest maintaining the current family-based regulations for living organ donation in Bangladesh. Furthermore, the study highlighted a potential consequence: amending the regulation to permit donations to unrelated recipients could significantly amplify the issue of organ selling and buying. While Islam advises Muslims to be compassionate towards all humankind, it also encourages Muslims to prioritize saving the lives of family members. This religious belief limits Muslims from donating organs to family members. (shrink)

BackgroundPromoting the social value of global health research undertaken in resource poor settings has become a key concern in global research ethics. The consideration for benefit sharing, which concerns the elucidation of what if anything, is owed to participants, their communities and host nations that take part in such research, and the obligations of researchers involved, is one of the main strategies used for promoting social value of research. In the last decade however, there has been intense debate (...) within academic bioethics literature seeking to define the benefits, the beneficiaries, and the scope of obligations for providing these benefits. Although this debate may be indicative of willingness at the international level to engage with the responsibilities of researchers involved in global health research, it remains unclear which forms of benefits or beneficiaries should be considered. International and local research ethics guidelines are reviewed here to delineate the guidance they provide.MethodsWe reviewed documents selected from the international compilation of research ethics guidelines by the Office for Human Research Protections under the US Department of Health and Human Services.ResultsAccess to interventions being researched, the provision of unavailable health care, capacity building for individuals and institutions, support to health care systems and access to medical and public health interventions proven effective, are the commonly recommended forms of benefits. The beneficiaries are volunteers, disease or illness affected communities and the population in general. Interestingly however, there is a divide between "global opinion" and the views of particular countries within resource poor settings as made explicit by differences in emphasis regarding the potential benefits and the beneficiaries.ConclusionAlthough in theory benefit sharing is widely accepted as one of the means for promoting the social value of international collaborative health research, there is less agreement amongst major guidelines on the specific responsibilities of researchers over what is ethical in promoting the social value of research. Lack of consensus might have practical implications for efforts aimed at enhancing the social value of global health research undertaken in resource poor settings. Further developments in global research ethics require more reflection, paying attention to the practical realities of implementing the ethical principles in real world context. (shrink)

Photo by Tingey Injury Law Firm on Unsplash ABSTRACT The coverage of healthcare costs allegedly brought about by people’s own earlier health-adverse behaviors is certainly a matter of justice. However, this raises the following questions: justice for whom? Is it right to take people’s past behaviors into account in determining their access to healthcare? If so, how do we go about taking those behaviors into account? These bioethical questions become even more complex when we consider them in the context of (...) a commitment to publicly funded, universal healthcare coverage. INTRODUCTION Healthcare coverage of lifestyle-related conditions is certainly a matter of justice. However, this raises the following justice-related question: Is it right to consider people’s past behaviors in determining their access to healthcare? If so, the methods of taking those behaviors into account must be fair and justifiable. This bioethical question becomes even more complex when we consider it in the context of a commitment to publicly funded, universal healthcare coverage. This paper takes an old, classic debate, evaluates newer approaches, and offers an argument favoring a combined approach which alters the liberal-egalitarian solution to account for social justice. ANALYSIS I. Causes of Disease If healthcare coverage were universal, irrespective of socioeconomic status and lifestyle, people would contribute to the cost of remedying the lifestyle-induced health problems of others. In the West, lifestyle-related diseases are burdensome.[i] This paper approaches this concern from a western lens that incorporates both a European tradition of “social safety nets” and an American tradition of personal freedoms. By taking such an approach, solutions to the consequences of one’s past behavior burdening others must consider an individual’s personal freedom to choose to act as he or she wishes, with the distributive social and economic equality of the many. The concept of disease caused by lifestyle and diet is proven. Many health conditions include behavioral risk factors. Multi-pack smoking increases the risk of chronic lung disease, while obesity increases the risk of type 2 diabetes. Inattention to high blood pressure, high cholesterol, and a lack of exercise leads to increased risks of coronary artery disease.[ii] While poor lifestyle choices certainly influence these conditions, their causes are multifactorial, and it is difficult to say that any single string of poor choices led to their development. In a scenario where two men excessively eat fast food for 20 years, several discrete factors impact whether any of them might suffer an ischemic-embolic stroke or not. Genetics, circumstances, and activity will also contribute to outcomes. II. Alcohol-Related End-Stage Liver Disease One paper suggests that alcohol-related end-stage liver disease (ARESLD) differs from other multifactorial disorders as alcohol alone causes the disease.[iii] It justifies attributing personal responsibility to patients with ARESLD because the condition develops only after the cumulative effects of large quantities of alcohol consumed from years to decades.[iv] However, the paper undermines its position by admitting that even the susceptibility to becoming an alcoholic has some degree of genetic predisposition.[v] Given the extreme scarcity of donor livers, some patients may be prioritized over others on the transplant waiting list. Since donor livers cannot be given to everyone, transplanting a liver into an alcoholic may result in death for competing candidates whose liver disease was not their fault. All else being equal, if bioethicists avoid claiming moral deficiency or judgment, those with apparently self-inflicted ARESLD will not be deprived of treatment but will have a lower priority for transplant.[vi] In contrast, another position suggests that it is often difficult to define what behaviors are punishable as these are largely personal and value-laden.[vii] Still, people do not support using their own resources to support the consequences of others’ poor choices, no matter how objective.[viii] In democratic societies, one must take into consideration community morals and values.[ix] Even if we were to punish people for their health-adverse behaviors, we could not logistically employ the vigorous and sustained efforts necessary to determine whose actions are morally weak.[x] III. The Liberal-Egalitarian Proposal One past argument proposes a liberal-egalitarian solution to manage personal responsibility for so-called “lifestyle diseases.”[xi] This Rawlsian system combines the European-style “social safety net” commitment to social and economic equality with the American liberal notion of pluralist toleration and personal freedoms. This idealized system aims to hold people responsible for their choices rather than the consequences to mitigate the downside of blaming those who might not be blameworthy. The approach avoids determining the questionable nature of luck and personal responsibility for health outcomes, fairness in the distribution of economic burden, and the intrusiveness required to practically determine who acts in a morally wrong and health-adverse way. The liberal-egalitarian model, a theory of distributive justice, has two facets: the liberal principle that people should be held accountable for their choices and the egalitarian principle that people who make the same choices should have the same outcomes.[xii] This model attempts to fuse responsibility with equity by seeking to reward good behavior and tax bad behavior rather than punish the consequences of the action and navigate who deserves treatment. For instance, the hospital bedside is not the appropriate place to introduce responsibility for one’s health outcomes.[xiii] This appeals to the reality that, at that time, discerning the true causes of disease was not plausible and to humanity in avoiding a heartless and cruel approach. An argument in favor of the liberal-egalitarian model considers its method of implementation. This approach assumes that the healthcare system treats all individuals regardless of their choices or ability to cover costs. The liberal-egalitarian model also assumes that a certain adverse health condition is related, statistically speaking, to the consumption of a certain good and that good can be taxed. As such, it proposes to tax the consumption of that good to finance the collective burden which arises from that good’s consumption rather than require individuals to pay for their own treatment. In the example of ARESLD, the recommended solution would be taxing all alcohol. While a systematic infrastructure is not explicit, there is the implication that a per-unit tax can be imposed on alcohol so the total tax revenue would make up for the additional healthcare costs due to consumption.[xiv] Upholding the principle that all people who make the same choices should face the same costs, all consumers of alcohol would pay the same tax, regardless of factors such as genetic predisposition to alcoholism, lifestyle, or expected cost of treatment. Upholding the principle of individual responsibility, this model does not deny treatment to anyone, neutralizing factors outside that individual’s control by imposing the tax ex-ante. Other people are not burdened by those who consume the good. People who consume alcohol face a burden proportional to the amount consumed. This tax-based implementation is justified so long as the tax is not prohibitively high for the average consumer. Further, the model mitigates concerns over the intrusiveness of ascribing morality to health-adverse behaviors. IV. Moral and Social Arguments Against the Liberal-Egalitarian Position Arguments against the liberal-egalitarian model concerns its many assumptions. First, this model assumes that consumption of such goods is directly related to the health outcome and that these goods can be taxed.[xv] Certain people genetically predisposed to alcoholism would be predisposed to consume more alcohol. The model falls short when applied to scenarios where health outcomes are not consumption-based, such as engaging in unsafe sex or abstaining from healthy lifestyle choices like exercise. Second, some might argue that the liberal-egalitarian model fails to remain neutral. Residual moral judgments tied to consumption choices introduce non-neutrality. Although taxation in free societies is determined by democratic procedures rather than by individuals in the healthcare system, moral and value-based judgments will be implicit in deciding what behaviors are taxable, such as the purchase of cigarettes. Third, the liberal-egalitarian model fails to determine whether one’s behavior is autonomous, as socio-cultural-economic factors may influence it and behavior is more a product of society, peer pressure, or income. Those also may reflect systemic inequalities. Therefore, this model, which rewards, or taxes based solely on decisions, regardless of their consequences and motivations, fails to consider that a person’s decisions may not be completely autonomous. V. Libertarian Arguments Against the Liberal-Egalitarian Model a. State Intrusiveness as Counter to the Liberal-Egalitarian Model Last, there is a libertarian worry that if the state guarantees universal healthcare coverage to all people, the state will have to become highly intrusive and investigate people’s morals.[xvi] At least one-third of all disease burden in North America, Europe, and the Asia-Pacific is attributable to lifestyle measures such as tobacco smoking, alcohol consumption, high cholesterol, and obesity.[xvii] With these various lifestyles, it is not likely to agree on what conduct to tax or condemn.[xviii] The fine-toothed comb required to determine whether each citizen has been engaging in these behaviors would intrude on daily life and personal freedom. Libertarians champion the argument that impractical intrusiveness would result from universal healthcare, and such a degree of intrusiveness would likely be universally unacceptable.[xix] The liberal-egalitarian model mitigates the libertarian worry about state intrusiveness as it does not involve prying into one’s life and choices other than taxing goods. A liberal state should ideally be neutral to how people decide to live their lives. In all, libertarians can rest assured that the liberal-egalitarian tax-based model, through its ex-ante implementation, will require no prying state eyes. States that provide universal healthcare coverage and wish to condemn certain misconduct do not need to become overly intrusive to carry out measures to hold individuals accountable. b. Fairness Another libertarian worry regarding the guarantee of universal healthcare coverage in the context of lifestyle-driven diseases is that the public will be burdened unfairly with covering others’ ill-advised mistakes or bad luck. An ideal system to address this worry would link treatment or payment for treatment with whatever behavior caused that need.[xx] The distribution of burdens should be linked to how different individuals contributed to the creation of those burdens. Applied to health policy, we should ask how the need for a certain treatment arose when determining how to distribute its cost.[xxi] The liberal-egalitarian model aspires to hold individuals responsible for their choices, not for the consequences of such choices. This model significantly mitigates the libertarian worry over unfair burdens for covering other people’s mistakes or social conditions, which lead to those bad outcomes, by ensuring to not burden others with any of the costs for the treatment of people who decide to engage in certain health-adverse behaviors. The aforementioned taxation-based system would only tax those who also engage in the health-adverse behavior through consumption, and that tax directly pays for the necessary collective treatment. As such, those who do not consume the good are not involved with the payment scheme, while those who do consume the good are responsible for payment in a matter proportional to the amount of the good they have consumed. VI. Universal Coverage Taking a step back, one should consider whether these worries regarding the coverage of apparently self-inflicted health conditions in the context of universal healthcare are worthwhile issues. One perspective raises what is called the culturally imagined objection — an idea erroneously held by many that sick people, especially those who are poor and uneducated, bring these illnesses upon themselves due to poor decision-making and irresponsible risk-taking.[xxii] This perspective critiques the uniquely American view that, since individuals are free to choose their lifestyles, they should bear the costs of their lifestyle.[xxiii] Taking this argument further, some (perhaps the strongly libertarian) would say that the poor health status among many individuals is the price individuals must pay for their American way of life and the liberty and freedom to live as they wish. However, people should not completely punish individuals for their health-adverse behaviors because these choices are largely pre-determined by a person’s socioeconomic influences.[xxiv] The outcomes from these allegedly ill-advised behaviors, which largely affect poorer people, are not just poor behavior but rather a public health crisis. Perhaps the state and its people should take collective responsibility and cover the costs of treatment for those health outcomes without question, as a form of public service. Rather than worrying about accountability and taxing bad behavior or intrusiveness into personal decisions, some might argue that people need to collectively take responsibility for reducing the overarching systemic inequalities and covering the associated treatment costs as a measure of public health. VII. Proposed Solution Given the strengths of the liberal-egalitarian model and taking into account libertarian and social justice-oriented objections, an ideal solution for the coverage of lifestyle-related health problems needs to consider the complex relationship between a person’s behaviors and their apparent health outcomes. It must consider how society as a whole passes judgment on behaviors and how to take into account that many health-adverse decisions are not truly autonomous decisions, as various genetic and socioeconomic factors influence them. An ideal solution combines the liberal-egalitarian tax-based model with the social justice concerns of universal coverage. Whatever the cost for the treatment of medical issues resulting in part or entirely from lifestyle and diet, taxes collected from spending associated with the behavior (like the purchase of alcohol, junk food, and cigarettes) ex-ante should fund 50 percent of the cost of treatment, while the universal healthcare taxation scheme should include the other 50 percent. Such a system would provide an incentive to avoid the purchases that can lead to unhealthy consumption and make healthier choices, slightly punish and discourage such purchases through taxation, yet not overly punish people whose outcomes may have more to do with socioeconomic factors and genetics. Adding public responsibility demonstrates acknowledgement that health care is in the public interest and can mitigate public health inequalities. This solution would fuse personal responsibility with the public responsibility of state-sponsored social improvement while ensuring that all people have fair access to necessary treatment, no matter their ability to pay. CONCLUSION The 50-50 system this paper proposes reflects both justice and personal responsibility in covering healthcare costs allegedly brought about by people’s own health-adverse behaviors. By allocating tax revenue from consumption that contributes or even alone causes poor health outcomes, such a system incorporates personal responsibility. By using general tax revenue for health care, such a system would meet the libertarian requirement of providing care without any moral investigation of past behaviors and the social justice consideration of providing health care to those who may have unwittingly ventured into ill-health due to systemic injustice, socioeconomics, or genetics. - [i] Cappelen, A. W. (2005). Responsibility in health care: A liberal egalitarian approach. Journal of Medical Ethics, 31(8), 476–480. https://doi.org/10.1136/jme.2004.010421 [ii] Moss, A. H. (1991). Should alcoholics compete equally for liver transplantation? JAMA: The Journal of the American Medical Association, 265(10), 1295–1298. https://doi.org/10.1001/jama.1991.03460100097032 [iii] Moss, p. 1295-1298. [iv] Moss, p. 1296. [v] Moss, p. 1295-1298. [vi] Moss, p. 1295-1298. [vii] Cohen, C. IS THIS SUPPOSED TO BE COHEN AND BENJAMIN (1991). Alcoholics and liver transplantation. JAMA: The Journal of the American Medical Association, 265(10), 1299–1301. https://doi.org/10.1001/jama.1991.03460100101033 [viii] Cohen, p. 1299-1301. [ix] Moss, p. 1297. [x] Cohen, p. 1300. [xi] Cappelen, p. 478-480. [xii] Cappalen, p. 478-480. [xiii] Cappelen, p.479. [xiv] Cappelen, p. 479. [xv] Cappelen, p. 479 [xvi] Cohen, p. 1301. [xvii] Cappelen, p. 478. [xviii] Cohen, p. 1299-1301. [xix] Cohen, p. 1301. [xx] Cappelen, p. 476-480. [xxi] Cappelen, p. 476-480. [xxii] Kawachi, I. (2005). Why the United States is not number one in Health. Healthy, Wealthy, and Fair, 18–33. https://doi.org/10.1093/acprof:oso/9780195170665.003.0013 [xxiii] Kawachi, p. 18-33. [xxiv] Kawachi, p. 18-33. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Organizational Ethics and Health Care: Expanding Bioethics to the Institutional Arena **Laura Jane Bishop (bio), M. Nichelle Cherry (bio), and Martina Darragh* (bio)In 1995, the Joint Commission on Accreditation of Healthcare Organizations (JCAHO) expanded its patient rights standards to include requirements for assuring that hospital business practices would be ethical. Renamed “Patient Rights and Organization Ethics,” these standards are based on the realization that a hospital’s obligation to its (...) patients is derived from two relationships: the patient-provider relationship governed by “clinical ethics,” and the customer-supplier relationship governed by “business ethics.” “[This] boundary between ‘clinical’ ethics and ‘business’ ethics is not clear and in many cases is nonexistent. While marketing and admission practices are seen as issues related to ‘business’ ethics, they can lead to unneeded admissions or demand for unneeded services, both of which can unnecessarily expose the patient to the risk of side effects or complications. Likewise, underutilization of needed services is likely to lead to less than optimal health outcomes” (I. Schyve 1996, p. 17). “These new standards arose out of well-publicized concerns about abuses in which patients were admitted to hospitals unnecessarily and were discharged or transferred only after their insurance expired” (I. Schyve 1996, pp. 15–16).These abuses also sparked eloquent protests against threats to patient well-being and to the nature of the patient-provider relationship in the bioethics literature. The fiduciary responsibility of the provider to inform and to protect the patient was fragmented by insurer business practices such as gag clauses and economic credentialing of providers (VII. Scope Note 31, 1996). The background role that the institution plays, though poorly articulated historically, has been brought sharply into focus by the explosive growth of the managed practice of medicine. The context of medical ethics is no longer limited to the resolution of individual cases, but instead encompasses the adoption of institutional structures to protect and promote patient welfare (IV. Emanuel 1995, p. 335). In this new configuration, the institution and the providers are co-fiduciaries for populations [End Page 189] of patients, and the medicine that is practiced is “appropriately economically disciplined.” The expression “My patient always comes first” is no longer “... intellectually serious or morally responsible.” But, “... to be sure, both conceptually and in practice, being an economically disciplined fiduciary professional or institution is ethically unstable.... The task is to identify the boundaries outside of which institutional policy and behavior will not count as an ethically defensible form of being... [a] fiduciary.” (IV. McCullough 1997, pp. 143–44). This process of delimiting and enforcing boundaries requires the development of “... a language for talking about the ethical values of the organization. If such a language does not exist, discussions about ethics become cumbersome and unlikely to occur” (IV. Cleveland Clinic Foundation 1998, p. 2).As with bioethics generally, the literature addressing organizational ethics is multidisciplinary. JCAHO’s compliance guide for its revised standards, Ethical Issues and Patient Rights, draws on a wealth of ideas from both clinical ethics and business ethics. This is often an awkward alliance. “Because the study of organizational ethics is in its infancy compared to other areas of healthcare ethics, discussions about it often seem like hot air with no palpable payoff” (I. Boyle 1998, p. 2). The fact that “... there is an ancient history that reflects widespread doubt about the moral probity of business” (II. Frederick 1995, p. 209) does not help. To begin, “Aristotle had rude things to say about business” (II. Jackson 1998, p. 401). A brief review of introductions to several of the business ethics textbooks cited in this bibliography reveals that a rebuttal of “business ethics as an oxymoron” is the standard opening paragraph. This stigma is unfounded, and “increased stability” has characterized the state of business ethics literature during the 1990s (II. Beauchamp and Bowie 1997, p. ix). Significant attention has been given to elaborating two often overlapping theories—stakeholder and social contractarian.Originating in the 1960s as a pun on “stockholder,” proponents of stakeholder theory claim that a corporation’s fiduciary responsibility extends beyond increasing its profitability to protecting the rights of individuals or groups affected by its actions. Popular as a strategic planning tool in the... (shrink)

Bioethics has a founding story in which medical paternalism, the interference with the autonomy of patients for their own clinical benefit, was an accepted ethical norm in the history of Western medical ethics and was widespread in clinical practice until bioethics changed the ethical norms and practice of medicine. In this paper I show that the founding story of bioethics misreads major texts in the history of Western medical ethics. I also show that a major source for (...) empirical claims about the widespread practice of medical paternalism has been misread. I then show that that bioethics based on its founding story deprofessionalizes medical ethics. The result leaves the sick exposed to the predatory power of medical practitioners and healthcare organizations with only their autonomy-based rights to non-interference, expressed in contracts, to protect them. The sick are stripped of the protection afforded by a professional, fiduciary relationship of physicians to their patients. Bioethics based on its founding story reverts to the older model of a contractual relationship between the sick and medical practitioners not worthy of intellectual or moral trust (because such trust cannot be generated by what I call ‘deprofessionalizing bioethics’). On closer examination, bioethics based on its founding story, ironically, eliminates paternalism as a moral category in bioethics, thus causing bioethics to collapse on itself because it denies one of the necessary conditions for medical paternalism. Bioethics based on its founding story should be abandoned. (shrink)

As the world's population ages, governments and non-governmental organizations in developed countries are promoting healthy cognitive ageing to reduce the rate of age-related cognitive decline and sustain economic productivity in an ageing workforce. Recommendations from the Productivity Commission, Dementia Australia, Government Office for Science, Presidential Commission for the Study of Bioethical Issues, Institute of Medicine, among others, are encouraging older adults to engage in mental, physical, and social activities. These lifestyle recommendations for healthy cognitive ageing are timely and well (...) supported by scientific evidence but they make implicit normative judgments about the responsibility of ageing individuals to prevent cognitive decline. Ethical tensions arise when this individual responsibility collides with social and personal realities of ageing populations. First, we contextualize the priority given to healthy cognitive ageing within the current brain-based medical and social discourses. Second, we explore the individual responsibility by examining the economic considerations, medical evidence and individual interests that relate to the priority given to healthy cognitive ageing. Third, we identify three key ethical challenges for policymakers seeking to implement lifestyle recommendations as an effective population-level approach to healthy cognitive ageing. The result is a prospectus for future in-depth analysis of ethical tensions that arise from current policy discussions of healthy cognitive ageing. (shrink)

Photo ID 279661800 © Sidewaypics|Dreamstime.com ABSTRACT Decolonization is complex, vast, and the subject of an ongoing academic debate. While the many efforts to decolonize or dismantle the vestiges of colonialism that remain are laudable, they can also reinforce what they seek to end. For decolonization to be impactful, it must be done with epistemic and cultural humility, requiring decolonial scholars, project leaders, and well-meaning people to be more sensitive to those impacted by colonization and not regularly included in the discourse. (...) INTRODUCTION Decolonization is complex. To successfully achieve decolonization, projects should incorporate the voices of those subjugated or silenced. Including such voices requires sincerely exploring who has been affected by colonialism or neocolonialism and how, as well as cultural sensitivity. In its basic use, decolonization refers to countries under colonial rule gaining independence or freedom from forms of subjugation. Additionally, scholars use the term to refer to efforts to dismantle neocolonialism and vestiges of colonialism. The process includes de-silencing subjugated voices.[1] I use decolonization in the latter way to refer to countries with technical independence. While arguably colonization ended formally with independence from colonizing powers, neocolonialism is the indirect, informal, and sometimes subtle control of the people, their economy, and political life despite formal independence from colonizing authorities. I conceptualize neocolonialism as a system that involves direct and involuntary control of another’s political, economic, or social life, impacting their worldview and ways of encountering the world. Decolonization may target actions, places, or systems like health care or AI to overcome the ills of colonialism and neocolonialism. It also may target knowledge and require rethinking how people develop their knowledge base. For example, if people grew up seeing an outside colonizer as superior, they would need to change their knowledge of superiority. Decolonization may target power, for example, changing who owns and distributes COVID-19 vaccines and who distributors exclude in the distribution of vaccines. Decolonization could require looking at those disempowered in the distribution process. Additionally, decolonization may target autonomy of persons by freeing people, ensuring human and individual rights, and respecting cultural traditions. Decolonization projects that try to de-silence by including the voices of those affected by colonialism and neocolonialism must examine inclusiveness in the context of the culture of the subrogated individuals. Examples of decolonization projects include making datasets inclusive of diverse peoples and places, returning to traditional food and eating practices, making sure hospitals in developing countries are led by locals and respectful of cultural traditions, returning unethically obtained artefacts or objects. Another project would be laying the groundwork for equality in formerly colonized countries to ensure that business ownership, education, and financial success will flow fairly to those previously victimized by colonization. Summarily, there are many strategies for decolonizing. However, it is worth asking whether the strategies have risks that undermine the goal of decolonization. I. Understanding Decolonization Discourses Many fields, from AI to politics, economics, health care, aviation, and academia, discuss decolonization. The content of the discourse on decolonization depends on the region and field discussing it. Rather than just reporting on decolonization, the discussions may be calls to action. For example, decolonization discourses reflect activism for cognitive justice, such as equal consideration of Indian or African knowledge systems in global health discourses.[2] In politics and political science, some scholars frame decolonization as an anti-western, anti-colonial movement by Africans to emancipate Africa/ns from subjugation or shift the continent to postcolonialism and post-neo-colonialism. This framing walls off non-African participants and may undermine their capacity to benefit the conversation.[3] There are other political scientists who actively support decolonization and see it as a field of activism in support of anyone and countries where colonization harmed people and development.[4] The point is that two ways of conceptualizing decolonization in politics and political science are discernible. One conceptualization is less inclusive since it alienates scholars and professionals from Western, high-income, or developed countries. The other is more inclusive. In humanitarian studies, including philosophy, some decolonization articles and conversations are efforts to end the destructive force of colonization. They focus on either the form, such as ecocide, genocide, and many others, or the geographic location, such as Africa, Asia, Latin America, and Oceania.[5] Finally, the feelings one brings into this conversation can adversely impact how one engages in them and who they listen to or are willing to hear from. For example, anger, rage, bitterness, and hatred are emotions that are not uncommon in spaces of decolonization conversations. Decolonization conversations that originate from a place of negativity risk deepening the psychological state of victimhood and prevent people from disrupting constructively or critically engaging in the conversation.[6] II. Understanding Decolonization Strategies Decolonization strategies mainly aim to de-silence victims of domination or subjugation. People have proposed many strategies for decolonizing. These strategies may be informed by what the target is for decolonization. Decolonization can target power relations in global health. For example, during the COVID-19 pandemic, public health organizations noted the power imbalance in vaccine distribution. Decolonization could involve de-silencing those affected by neocolonialism to bring about a more balanced distribution of power and a more fair distribution of the vaccine. By analyzing who was adversely impacted by the distribution and who ought to wield power, those engaged in decolonizing advocated for positive change and equitable power relations. Equally, when being is the target of decolonization, the language of unlearning or relearning and mental decolonization take centre stage in the decolonization discourse. For example, the quest to decolonize colonized minds aims to demythologize African inferiority and Western superiority. Demythologizing African inferiority enables those engaged in the decolonization discourse to cultivate and foster African agency.[7] Finally, when knowledge production is the target of decolonization, scholars use inclusion and cognitive justice. For example, they try to alter the knowledge that underlies global health ethics.[8] “[D]decolonizing researchers aim to respectfully understand and integrate theory from Other(ed) perspectives, while also critically examining the underlying assumptions that inform their Western research framework.”[9] One common strategy that scholars use in decolonization is inclusion. It is worth asking, does including people who have been subrogated foster decolonization? Whether that is effective depends on whether included people are more heard or whether the strategies to include them create new forms of silencing. III. Inclusion and the Quest to Decolonize Evaluating how effective inclusion is in the quest to de-silence subjugated voices is important. First, inclusive strategies are not neutral. They are epistemically situated. This situatedness constrains meaning-making in different ways: how and what questions are asked, how social roles are constructed, organized or assigned, and who is admitted to the room where these conversations occur.[10] Inclusion strategies may reinforce (unchallenged) assumptions. For example, to address prejudices and stereotypes in global health images, Arsenii Alenichev and his colleagues[11] successfully inverted “one stereotypical global health image” by prompting a generative AI to produce “an image of a traditional Indian or African healer healing a White Child.” Although there were some problems with the image of the White child, this innovation is a significant, useful effort to de-embed or strip global health images of problematic pictures that mythologize White superiority and Black inferiority. Yet it is possible that using categories like traditional Indian or African reinforces unchallenged assumptions, raising key questions regarding how language and words create new stereotypes. It is common to define traditional as non-conventional, unorthodox, and informal. Yet studies continue to reveal that non-scientifically appraised healing approaches in India or Africa are not only effective but also real, meaningful, fundamental, and primary care-seeking behaviours in many communities in these regions.[12] Suppose inclusive strategies are not un-situated. These conversations may be had within the structures, language, and spaces built by or connected to colonialism. The spaces, language, places, and structures in which these conversations occur can limit who can participate and how they participate. Importantly, some conditions are not conducive to participation as equals. The allocated time for the discussion could also constrain how individuals express themselves. It is unclear who is ultimately heard. Furthermore, epistemic situatedness of inclusion can impact decolonization conversations when participants are beneficiaries of, products of, and trained by structures and systems they seek to dismantle. To enhance the decolonization project and its goals, a pressing task is to unveil and question how the circumstances may inhibit activism. If the vestiges of colonialism continue to structure the decolonization discourse invisibly, the vestiges may undermine decolonization. For example, a public health discussion that includes white Western doctors and Western pharmaceutical executives in Africa may have many local Africans at the table but could still effectively devalue their input based on built-in assumptions and biases that are vestiges of colonialism. Second, exclusion and inclusion are also not binary. Individuals may experience exclusion, even while included (the phenomenon called internal exclusion). In other words, inclusion can fail to be substantial or become a means of enhancing optics, “a way of (un)consciously weakening the radical claims being pursued.”[13] For example, in South Africa, many institutions have made significant efforts to diversify their faculties due to the promulgation of the Employment Equity Act 55.[14] The act requires South African institutions to implement employment equity that redresses the history of harmful discrimination in the country. The act further requires transforming departments and institutional administrations. Although many recognize and support the need to transform departments in South Africa, the rhetoric of transformation departs sharply from the lived experiences.[15] This misalignment between the plan and practice is evident in the underrepresentation of black people and females in senior management teams, professorships in many universities and health departments, and positions of power in some South African institutions. Those selected in the transformation of the departments have also complained of being overworked. The burden of extra work undermines their ability to develop agency and voice in the space they now occupy or fulfil key requirements that have implications for their career trajectory.[16] This is called the minority tax. Notably, "the minority tax… is the burden of extra responsibilities [placed] on faculty of colour to achieve diversity and inclusion and contributes to attrition and impedes academic promotion."[17] One challenge for decolonializing projects will be for decolonial scholars and those selected for decolonization objectives to have the humility to decline invitations, requests, roles, and platforms for which they are either unqualified or lack the capacity to fulfil. At its heart, decolonization strategies must empower those included rather than weaken them. Finally, inclusion can lead to a phenomenon known as elite capture.[18] Elite capture occurs when socially advantaged individuals in a group monopolize or exploit activism to their own benefit at the expense of the larger, struggling group. Elite capture weakens decolonization efforts from within, revealing that those likely to benefit from global inclusive efforts are those who fulfil globally constructed standards, those “already present in the room.” There is no better strategy to weaken decolonial movements than weakening the project from within by strategically positioning individuals who share physical properties with the victims of exclusion and silencing but intellectually, behaviourally, psychologically, and emotionally share more common ground with the colonizer. Such insiders may be unaware they are furthering neocolonial conditions rather than decolonizing. In relation to decolonization, particularly in global health, elite capture reveals that those whose voices are loudest in the room are not necessarily those more impacted by colonialism. They may benefit more from reinforcing colonialism. Opportunism weakens meaningful activism from within, preventing good initiatives and strategies from having their intended impact or taking substantive root.[19] This paper cannot do justice to elite capture, but it is worth noting its negative impacts. IV. Improving the Impact of Decolonization To end neo-colonialism, it is important to understand how it manifests and what to do at each level. Beyond the academic discourse, many tangible efforts exist to decolonize through de-silencing. Examples of these efforts include the ME2 movement that seeks to centre the concerns and experiences of sexually abused or harassed victims in the public discourse. At the funding level, many grant-awarding agencies like Wellcome Trust have dedicated huge budgets to studies that help them understand how they may have perpetrated colonialism or neocolonialism and what they can do differently going forward.[20] In South Africa, promulgating the Employment Equity Act 55 was a tangible attempt to entrench decolonization concerns in a country's regulatory framework. Yet, these decolonization efforts could fail to be substantive if they do not reflect cultural sensitivity. Two key components of cultural sensitivity are worth highlighting here: epistemic and cultural humility. Epistemic humility is an intellectual virtue described as knowing one’s limitations and the limitations of the learning methods employed. At its simplest, it is the ability to admit when one is wrong. Cultural humility includes genuine attempts to learn about and embrace other cultures. Epistemic and cultural humility are signs of academic excellence and strength. Epistemic and cultural humility seriously acknowledge how the state of our knowledge, cognitive limitations, experiences, and backgrounds, while constraining us, also invite us to listen, learn, grow, and change. The limitations-owing account of epistemic and cultural humility suggests that “a person who is aware of her cognitive limitations and owns them is much better positioned to achieve such epistemic goods as true beliefs and understanding than someone who… simply has insight into the epistemic status of her beliefs.”[21] Epistemic and cultural humility may help prevent decolonization projects that unintentionally reinforce what they seek to dismantle. Epistemic humility calls on decolonizers to defer tasks for which they are not qualified to suitably qualified persons. Beyond this, humility supports brave scholarship that imagines and reimagines how featuring the same voices, faces, and perspectives possibly introduces new forms of domination or silencing. Cultural knowledge can lead to a more intentional way of seeking out the right people or a more diverse group than those frequently featured in decolonization conversations. This would give others more opportunities to navigate these spaces and should do so in ways that are familiar to them. One ought to be more sensitive to those who would ordinarily not be included in these conversations. Unless we radically and boldly reimagine these discussions, we risk alienating those most negatively impacted by neocolonialism. CONCLUSION Decolonization conversations are complex and the subject of academic debate. The strategies employed to decolonize can harm or help the victims of neo-colonialism. Inclusion of previously silenced individuals may not be enough to overcome the vestiges of colonialism, leading to a false inclusion, where those included feel excluded or contribute in ways reflecting their own biases and circumstances. Inclusion of an elite or people who do not truly represent the subjugated can lead to elite capture. For decolonization strategies to be impactful, for example, in the context of global health, project leaders and participants must engage in conversations employing epistemic and cultural humility. In many ways, epistemic and cultural humility can help us demythologize our assumptions of any cultural superiority or cognitive authority, allowing for diverse voices, cultures, and perspectives to emerge without domination. - [1] Caesar Atuire & Olivia Rutazibwa. 2021. An African Reading of the Covid-19 Pandemic and the Stakes of Decolonization. An African Reading of the Covid-19 Pandemic and the Stakes of Decolonization [Online]. Available from: https://law.yale.edu/yls-today/news/african-reading-covid-19-pandemic-and-stakes-decolonization [Accessed July 29, 2021 2021]. [2] Bridget Pratt & Jantina De Vries 2023. Where is knowledge from the Global South? An account of epistemic justice for a global bioethics. Journal of Medical Ethics, medethics-2022-108291. [3] Anye-Nkwenti Nyamnjoh 2023. Is decolonisation Africanisation? The politics of belonging in the truly African university. Social Dynamics, 1-20. [4] Rianna Oelofsen 2015. Decolonisation of the African mind and intellectual landscape. Phronimon, 16, 130-146. [5] Caesar Atuire & Olivia Rutazibwa. 2021. An African Reading of the Covid-19 Pandemic and the Stakes of Decolonization. An African Reading of the Covid-19 Pandemic and the Stakes of Decolonization [Online]. Available from: https://law.yale.edu/yls-today/news/african-reading-covid-19-pandemic-and-stakes-decolonization [Accessed July 29, 2021 2021]. [6] Pedro Alexis Tabensky 2008. The Postcolonial Heart of African Philosophy. South African Journal of Philosophy, 27, 285-295. [7] Nicholas M. Creary 2012. African Intellectuals and Decolonization, Ohio, Ohio University Press. [8] Bridget Pratt & Jantina De Vries 2023. Where is knowledge from the Global South? An account of epistemic justice for a global bioethics. Journal of Medical Ethics, medethics-2022-108291. [9] Vivetha Thambinathan & Elizabeth Anne Kinsella 2021. Decolonizing Methodologies in Qualitative Research: Creating Spaces for Transformative Praxis. International Journal of Qualitative Methods, 20, 16094069211014766. [10] Abimbola Seye 2023. Knowledge from the global South is in the global South. Journal of Medical Ethics, 49, 337. [11] A. Alenichev, P. Kingori & K. P. Grietens 2023. Reflections before the storm: the AI reproduction of biased imagery in global health visuals. Lancet Glob Health. [12] Jonathan K. Burns & Andrew Tomita 2015. Traditional and religious healers in the pathway to care for people with mental disorders in Africa: a systematic review and meta-analysis. Social Psychiatry and Psychiatric Epidemiology, 50, 867-877. [13] Anye-Nkwenti Nyamnjoh & Cornelius Ewuoso 2023. What type of inclusion does epistemic injustice require? Journal of Medical Ethics, jme-2023-109091. [14] 1998. Employment Equity Act. In: GOVERNMENT, S. A. (ed.) 19370. [15] Dina Zoe Belluigi & Gladman Thondhlana 2019. ‘Why mouth all the pieties?’ Black and women academics’ revelations about discourses of ‘transformation’ at an historically white South African university. Higher Education, 78, 947-963. [16] Juliet Ramohai & Khomotso Marumo 2016. Women in Senior Positions in South African Higher Education: A Reflection on Voice and Agency. 231, 135-157. [17] J. Trejo 2020. The burden of service for faculty of color to achieve diversity and inclusion: the minority tax. Mol Biol Cell, 31, 2752-2754. [18] Olufemi Taiwo 2020. Being-in-the-Room Privilege: Elite Capture and Epistemic Deference. The Philosopher, 108, 7. [19] Margarita Kurbatova & Elena Kagan 2016. Opportunism of University Lecturers As a Way to Adaptate the External Control Activities Strengthening. Journal of Institutional Studies, 8, 116-136. [20] Jeremy Farrar. 2022. An update on Wellcome's anti-racist programme. An update on Wellcome's anti-racist programme [Online]. Available from: https://wellcome.org/news/update-wellcomes-anti-racism-programme [Accessed August 10, 2022 2022]. [21] Katherine Dormandy 2018. Does Epistemic Humility Threaten Religious Beliefs? Journal of Psychology and Theology, 46, 292-304. (shrink)

This book examines the many ethical issues that are encountered in the Pediatric Intensive Care Unit. It supports pediatricians, nurses, residents, and other providers in their daily management of critically ill children with the dilemmas that arise. It begins by examining the evolution of pediatric critical care, and who is now impacted by this advancing medical technology. Subsequent chapters explore specific ethical concerns and controversies that are commonly encountered. These topics include how to conduct end-of-life discussions with families facing (...) a myriad of challenging choices. It goes on to explore the concept of futility, and what that does and does not mean in the pediatric ICU setting. Controversial subjects such as children as organ donors, particularly using donation after cardiac death, in addition to issues surrounding the declaration of brain death are covered. Additional chapters address resource allocation, and also analyze the use of long-term technology in chronically critically ill children. Chapters include case examples with guidance on how to work through similar difficulties and decision-making. While this book is specifically targeted for care providers at the ICU bedside, it is also of benefit to medical students, students in bioethics, practicing ethical consultants and families who are dealing with critically ill children. (shrink)

In summary, the usual elements of a typical health care ethics consultation note might reasonably accommodate the needs and expectations of relevant parties, and would therefore include: 1. identification of the relevant ethical issues, questions, or dilemmas; 2. reference to any relevant facts--medical, nursing, social, psychological, spiritual, legal, political, etc.; 3. a prioritized list of recommendations to improve coordinated care; 4. a clear and concise articulation of relevant arguments, wtih specific reference to the list of recommendations as well (...) as to the institution's overall ethos; 5. a contextual statement, identifying the perceived degree of consensus or support for the recommendations and conclusions, as well as any inherent agendas. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:The Human Genome Project and BioethicsEric T. Juengst, Ph.D. (bio)The fifteen-year "human genome project" at the National Institutes of Health and the Department of Energy officially began on October 1, 1990. With it began a new dimension in federally supported scientific research: concurrent funding for work to anticipate the social consequences of the project's research and to develop policies to guide the use of the knowledge it produces. (...) As a result, the National Center for Human Genome Research (NCHGR) at NIH will support the largest public investment in bioethical analysis to date.NCHGR was established to work with other federal, private, and international organizations on the scientific effort to characterize the form and content of the human genome. The research will yield information—high-resolution genetic linkage and physical maps of all the human chromosomes as well as human DNA sequence data—that will be a resource for studies of gene structure and function. It will greatly increase our understanding of the genetic aspects of human health and disease. That increased understanding will eventually provide insights into the prevention and treatment of the 3,000 known inherited disorders, and of conditions caused by our (gene-governed) physiological reactions to pathogens, toxins, and mutagens of external origin.It has been clear since the conception of the human genome project, however, that professional and public deliberations concerning the responsible use of genetic information must be a part of the process. The most immediate consequence of genome research will be the development of new diagnostic and predictive tests, well in advance of corresponding therapeutic or curative advances. The implications of acquiring and using that knowledge about individuals raise policy questions at many levels within society. The primary purpose of the Ethical, Legal and Social Implications Program at the NCHGR is to anticipate and address these questions early in the life of the scientific project, to help optimize the [End Page 71] benefits to human welfare and opportunity from the new knowledge, and to guard against its misuses.The program has identified three sets of questions as particularly important to pursue as the genome initiative proceeds:1.Issues involved in the integration of new genetic tests into medical practice. Human genome research is expected to increase greatly the number of gene-based diagnostic and prognostic tests available to health professionals. The bioethical policy problems involved in integrating those tests effectively into medical practice include developing standards for:— accuracy and quality control of genetic tests;— medical indications for testing and design of testing protocols;— professional responsibilities of clinicians who perform tests;— confidentiality of information obtained from testing;— access to and use of test results by third parties, such as health insurers; and— reimbursement for testing and test-related counseling.These are problems for both those charged with regulating the use of new genetic tests and for those establishing the standards of practice within the health professions. Thus, in addition to soliciting and funding scholarly research proposals on both the factual and normative questions raised by these problems, the program is commissioning a major new study by the National Academy of Sciences/Institute of Medicine aimed at providing professional guidelines for the integration of genetic services into mainstream medical practice.2. Issues involved in educating and counseling individuals about genetic test results. The primary risk that health professionals will face in using genetic tests is the misinterpretation of their findings and the resulting potential for psychological trauma, stigmatization, and discrimination. Sometimes, out of ignorance, patients, families, and social institutions already stigmatize genetic disorders and treat those with them unfairly. This risk broadens as the genetic elements of more health problems are uncovered and gene-based tests for susceptibilities and carrier states are developed.To protect against these risks, NCHGR is soliciting and supporting projects aimed at improving professional and public understanding of these tests and their implications. For example, a philosopher is leading a team of geneticists and physicians in a scholarly effort to clarify [End Page 72] concepts of genetic susceptibility and draw out the social meaning of their different interpretations. Other projects involve social scientific studies of genetic risk perceptions, stigmatization, and discrimination. The conclusions of these studies, and... (shrink)

Recent years have seen a rise in the number of sociological, anthropological, and ethnological works on the gift metaphor in organ donation contexts, as well as in the number of philosophical and theological analyses of giving and generosity, which has been mirrored in the ethical debate on organ donation. In order to capture the breadth of this field, four frameworks for thinking about bodily exchanges in medicine have been distinguished: property rights, heroic gift-giving, sacrifice, and gift-giving as aporia. (...) Unfortunately, they all run into difficulties in terms of both making sense of the relational dimensions of postmortem and live organ donations and being normatively adequate in the sense of shedding light and providing guidance on ethical concerns when body parts are donated. For this reason, this article presents a phenomenological framework of giving-through-sharing, based on Maurice Merleau-Ponty’s philosophy. This framework makes sense of relational dimensions of postmortem and live organ donation. It also sheds light on three highly debated concerns in organ donation ethics: indebtedness on the part of recipients, the fact that some live donors do not experience donation as a matter of choice, and the potentially painful experience of donors’ relatives, who need to make decisions about postmortem organ donation at a time of bereavement. It can indirectly support what may be called a normalization of bodily exchanges in medicine. (shrink)

Organ transplantation from living related donors in Bangladesh first began in October 1982, and became commonplace in 1988. Cornea transplantation from posthumous donors began in 1984 and living related liver and bone marrow donor transplantation began in 2010 and 2014 respectively. The Human Organ Transplantation Act officially came into effect in Bangladesh on 13th April 1999, allowing organ donation from both brain-dead and related living donors for transplantation. Before the legislation, religious leaders issued fatwa, or religious rulings, (...) in favor of organ transplantation. The Act was amended by the Parliament on 8th January, 2018 with the changes coming into effect shortly afterwards on 28th January. However, aside from a few posthumous corneal donations, transplantation of vital organs, such as the kidney, liver, heart, pancreas, and other body parts or organs from deceased donors, has remained absent in Bangladesh. The major question addressed in this article is why the transplantation of vital organs from deceased donors is absent in Bangladesh. In addition to the collection of secondary documents, interviews were conducted with senior transplant physicians, patients and their relatives, and the public, to learn about posthumous organ donation for transplantation. Interviews were also conducted with a medical student and two grief counselors to understand the process of counseling the families and obtaining consent to obtain posthumous cornea donations from brain-dead patients. An interview was conducted with a professional anatomist to understand the processes behind body donation for the purposes of medical study and research. Their narrative reveals that transplant physicians may be reticent to declare brain death as the stipulations of the 1999 act were unclear and vague. This study finds that Bangladeshis have strong family ties and experience anxiety around permitting separating body parts of dead relatives for organ donation for transplantation, or donating the dead body for medical study and research purposes. Posthumous organ donation for transplantation is commonly viewed as a wrong deed from a religious point of view. Religious scholars who have been consulted by the government have approved posthumous organ donation for transplantation on the grounds of necessity to save lives even though violating the human body is generally forbidden in Islam. An assessment of the dynamics of biomedicine, religion and culture leads to the conclusion that barriers to posthumous organ donation for transplantation that are perceived to be religious may actually stem from cultural attitudes. The interplay of faith, belief, religion, social norms, rituals and wider cultural attitudes with biomedicine and posthumous organ donation and transplantation is very complex. Although overcoming the barriers to organ donation for transplantation is challenging, initiation of transplantation of vital organs from deceased donors is necessary within Bangladesh. This will ensure improved healthcare outcomes, prevent poor people from being coerced into selling their organs to rich recipients, and protect the solidarity and progeny of Bangladeshi families. (shrink)

This volume attempts to show why ontology matters for a proper grasp of issues in bioethics. -/- Contemporary discussions on bioethics often focus on seeking solutions for a wide range of issues that revolve around persons. The issues in question are multi-layered, involving such diverse aspects as the metaphysical/ontological, personal, medical, moral, legal, cultural, social, political, religious, and environmental. In navigating through such a complex web of issues, it has been said that the central problems philosophers and bioethicists (...) face are ethical in nature. In this regard, biomedical sciences and technological breakthroughs take a leading role in terms of shaping the sorts of questions that give rise to ethical problems. For example, is it ethical to keep terminally ill patients alive on dialysis machines or artificial ventilators? Is it ethical to take someone’s vital organs upon death and transplant them into another person’s body without any prior consent from a deceased person? Reproductive techniques also raise complicated ethical issues involving in vitro fertilization, contraceptives, prenatal testing, abortions, and genetic enhancements. Moreover, biomedical issues raise ethical problems in regards to research on human subjects, stem cell research, and enhancement biotechnology. The beginning and end of life issues bring up their own complicated ethical conundrums involving, among other things, terminating life support and euthanasia. -/- This book approaches such complex bioethical questions by engaging in ground-level debates about the ontology of persons. This is a non-negotiable first step in taking steps forward in seeking a plausible solution(s) for the complex ethical problems in bioethics. Although the contributors in this book advance their arguments in their own ways, they all agree on one crucial methodological point: the importance of taking the ontology of persons for bioethics seriously. This is the spirit that brings the contributors of this book together as they seek to build their case(s) concerning the nature of persons. (shrink)