New data-driven technologies yield benefits and potentials, but also confront different agents and stakeholders with challenges in retaining control over their data. Our goal in this study is to arrive at a clear picture of what is meant by data sovereignty in such problem settings. To this end, we review 341 publications and analyze the frequency of different notions such as data sovereignty, digital sovereignty, and cyber sovereignty. We go on to map agents they concern, in which context they appear, (...) and which values they allude to. While our sample reveals a considerable degree of divergence and an occasional lack of clarity about intended meanings of data sovereignty, we propose a conceptual grid to systematize different dimensions and connotations. Each of them relates in some way to meaningful control, ownership, and other claims to data articulated by a variety of agents ranging from individuals to countries. Data sovereignty alludes to a nuanced mixture of normative concepts such as inclusive deliberation and recognition of the fundamental rights of data subjects. (shrink)

What renders some mentally disordered patients incapable of informed consent to medical interventions? It is argued that a patient is incapable of giving informed consent owing to mental disorder, if a mental disorder prevents a patient from understanding what s/he consents to; if a mental disorder prevents a patient from choosing decisively; if a mental disorder prevents a patient from communicating his/her consent; or if a mental disorder prevents a patient from accepting the need for a medical intervention. This paper (...) holds that a patient's capacity to give informed consent should be assessed clinically by using these conditions necessary for informed consent, and should be assessed specifically for each intervention and specifically at the time when the consent has to be given. The paper considers patients' incapacity to give informed consent to treatment, to give informed consent to be examined clinically, and to give informed consent to participate in research. (shrink)

OBJECTIVES: To identify the factors that influence the assessment of reported cases of physician-assisted death by members of the public prosecution. DESIGN/SETTING: At the beginning of 1996, during verbal interviews, 12 short case-descriptions were presented to a representative group of 47 members of the public prosecution in the Netherlands. RESULTS: Assessment varied considerably between respondents. Some respondents made more "lenient" assessments than others. Characteristics of the respondents, such as function, personal-life philosophy and age, were not related to the assessment. Case (...) characteristics, i.e. the presence of an explicit request, life expectancy and the type of suffering, strongly influenced the assessment. Of these characteristics, the presence or absence of an explicit request was the most important determinant of the decision whether or not to hold an inquest. CONCLUSIONS: Although the presence of an explicit request, life expectancy and the type of suffering each influenced the assessment, each individual assessment was dependent on the assessor. The resulting danger of legal inequality and legal uncertainty, particularly in complicated cases, should be kept to a minimum by the introduction of some form of protocol and consultation in doubtful or boundary cases. The notification procedure already promotes a certain degree of uniformity in the prosecution policy. (shrink)

According to the recovery model, mental healthcare should be aimed towards a conception of recovery articulated by a patient or service user in accord with his or her own specific values. The model thus presupposes and emphasises the agency of the patient and opposes paternalism. Recent philosophical work on the relations between respect, self-respect, self-esteem, shame, and agency suggests, however, two ways in which mental illness itself can undermine self-respect, promote shame and undermine agency, suggesting a tension within the recovery (...) model. I argue, however, that this is a tension rather than a fatal flaw by distinguishing between paternalist and non-paternalist clinical responses to this failure of agency. (shrink)

Background Intestinal transplant in infants with severe short bowel syndrome (SBS) is an emerging therapy, yet without sufficient long-term data or established guidelines, resulting in possible variation in practice. Objectives To assess current attitudes and counselling practices among physicians regarding intestinal transplant in infants with SBS, and to determine whether counselling and management vary between subspecialists or centres. Methods A national sample of practicing paediatric surgeons and neonatologists was surveyed via the American Academy of Paediatrics listserves. Results were analysed by (...) physician subspecialty and again by presence or absence of intestinal transplant at respondent's centre. Results The survey was completed by 433 respondents, consisting of 363 neonatologists and 70 paediatric surgeons. Fifty-seven respondents (13.2%) practiced at a centre that performed intestinal transplants in children. The vast majority of respondents (91% for preterm, 95% for term neonates) felt that maintaining a neonate with SBS on total parenteral nutrition for intestinal transplant was ethically optional (neither impermissible nor obligatory), and that parents should be given an informed choice whether to pursue that option. However, only 33% indicated they often/always offer intestinal transplant as a treatment option to families in this situation. Conclusions There is a marked disparity between individual physicians’ beliefs regarding the acceptability of intestinal transplant for severe SBS and their reported practice. Wide variability exists among physicians with respect to their knowledge, beliefs and practice regarding severe SBS, raising concerns about transparency and justice. Survival data prior to transplant, currently unavailable, are essential to rational decision making and informed parental permission. (shrink)

Most current dental ethics curricula use a deontological approach to biomedical and dental ethics that emphasizes adherence to duties and principles as properties that determine whether an act is ethical. But the actual ethical orientation of students is typically unknown. The purpose of the current study was to determine the ethical orientation of dental students in resolving clinical ethical dilemmas. First-year students from one school were invited to participate in an electronic survey that included eight vignettes featuring ethical conflicts common (...) to the health care setting. The Multidimensional Ethics Scale was used to evaluate the students’ ethical judgments of these conflicts. Students rated each vignette along 13 ethically relevant items using a 7-point scale. Nine of the thirteen items were analyzed because they represent the dominant ethical theories, including deontology. One hundred sixteen dental students successfully completed the survey. Of the analyzed items, those associated with deontology had comparatively weak associations with whether students judged the action to be ethical and whether students judged themselves likely to perform the action. Whether an action was judged to be caring had the strongest association with whether the action was judged to be ethical and whether students judged themselves likely to perform the action. These results suggest that adherence to duties or principles has weaker association with students’ ethical judgments and behavior compared to caring, which was found to be more influential in their ethical judgments and behavior. Current dental school curricula with a primary focus on deontology may no. (shrink)

Some ethicists argue that patient confidentiality is absolute and thus should never be broken. I examine these arguments that when critically scrutinised, become porous. I will explore the concept of patient confidentiality and argue that although, this is a very important medical and bioethical issue, this needs to be wisely delivered to reduce third party harm or even detriment to the patient. The argument for absolute confidentiality is particularly weak when it comes to genetic information and inherited disease.

We argue that the ecological research community should develop a plan for improving the ethical consistency and moral robustness of the field. We propose a particular ethics strategy—specifically, an ongoing process of collective ethical reflection that the community of ecological researchers, with the cooperation of applied ethicists and philosophers of biology, can use to address the needs we identify. We suggest a particular set of conceptual and analytic tools that, we argue, collectively have the resources to provide an empirically grounded (...) and conceptually complete foundation for an ethics strategy for ecological research. We illustrate our argument with information gathered from a survey of ecologists conducted at the 2013 meeting of the Canadian Society of Ecology and Evolution. (shrink)

Many problems that arise when providing pharmacy services may contain some ethical components and the aims of this study were to develop and validate a scale that could assess difficulties of ethical issues, as well as the frequency of those occurrences in everyday practice of community pharmacists. Development and validation of the scale was conducted in three phases: generating items for the initial survey instrument after qualitative analysis; defining the design and format of the instrument; validation of the instrument. The (...) constructed Ethical Issue scale for community pharmacy setting has two parts containing the same 16 items for assessing the difficulty and frequency thereof. The results of the 171 completely filled out scales were analyzed. The Cronbach’s α value of the part of the instrument that examines difficulties of the ethical situations was 0.83 and for the part of the instrument that examined frequency of the ethical situations was 0.84. Test–retest reliability for both parts of the instrument was satisfactory with all Interclass correlation coefficient values above 0.6,. The 16-item scale, as a self assessment tool, demonstrated a high degree of content, criterion, and construct validity and test–retest reliability. The results support its use as a research tool to asses difficulty and frequency of ethical issues in community pharmacy setting. The validated scale needs to be further employed on a larger sample of pharmacists. (shrink)

We argue that the privatisation of education needs to be understood through an ethical lens, and suggest a broad framework through which privatisation policies and practices might be ethically audited. These policies and practices -- it is suggested -- are creating new ethical spaces and new clusters of goals, obligations and dispositions. Whatever the merits of our particular reading of these changes, we would call for an urgent public debate on these questions -- one that looks beyond broad ideological questions (...) to consider the effects of privatisation on the nature of the services provided. (shrink)

In this article I use a case study of 3 newspaper pieces about assisted suicide and euthanasia to show how journalists can use analysis and commentary to highlight the ethical dimension of an important public issue. Using an approach grounded in ethical theory, I examine how these pieces-from the Christian Science Monitor, Los Angeles Times, and New York Times-shed light on ethical issues including matters of duties and consequences. It is argued that an analytical approach that openly frames a topic (...) as having a moral dimension is particularly appropriate for ethics coverage in light of the value-laden nature of writing about ethics. (shrink)

Media scholars have used ethical theory extensively to evaluate journalists' own ethical practices. However, they have given little attention to how ethical theory could be used to assess the way journalists cover the ethics of others. In light of the important role that medicine and other professions play in the lives of individuals and society, this article proposes a framework to evaluate news coverage of ethical issues that involve professions and in society. After making the case for the need for (...) this framework, the article describes the framework itself and the rationale for each component. Finally, ideas for applying the framework in future research are suggested. (shrink)

This article is based on a qualitative empirical project about a distinct kinship group who were among the first identified internationally as having a genetic susceptibility to cancer. 50 were invited to participate. 15, who had all accepted testing, were interviewed. They form a unique case study. This study aimed to explore interviewees’ experiences of genetic testing and how these influenced their family relationships. A key finding was that participants framed the decision to be tested as ‘common sense’; the idea (...) of choice around the decision was negated and replaced by a moral imperative to be tested. Those who did not follow ‘common sense’ were judged to be imprudent. Family members who declined testing were discussed negatively by participants. The article addresses what is ethically problematic about how test decliners were discussed and whether these ethical concerns extend to others who are offered genetic testing. Discussions showed that genetic testing was viewed as both an autonomous choice and a responsibility. Yet the apparent conflict between the right to autonomy and the moral imperative of responsibility allowed participants to defend test decliners’ decisions by expressing a preference for or defending choice over responsibility. The ‘right not to know’ seemed an important moral construct to help ethically manage unpopular decisions made by close family who declined testing. In light of this research, the erosion of the ‘right not to know’ in the genomic age could have subtle yet profound consequences for family relationships. (shrink)

There has been increasing interest in developing practical, non-theoretical tools for analyzing ethical problems in public health, biomedicine, and other scientific disciplines so that professionals can make and justify ethical decisions in their own research or practice. Tools for ethical decisionmaking, together with case studies on ethics, are often used in graduate education programs and in continuing professional education. Students can benefit from opportunities to further develop their analytical skills, to recognize ethical issues, and to develop their moral sensitivity. One (...) practical approach for illustrating and facilitating ethical analysis uses cases with contrary facts and circumstances, an approach which complements rather than replaces theoretical approaches to moral reasoning. Cases with contrary facts and circumstances are presented in two or more alternative ways so that the facts, circumstances, or framing of one version runs counter to that of the other version (s). Cases with contrary facts, together with practical steps for identifying and analyzing ethical issues, are likely to be useful tools for illustrating and facilitating ethics analysis and stimulating the moral imagination. (shrink)

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

Departing from theories of distributive justice and their relation with the distribution of health care within society, especially egalitarianism and libertarianism, this paper aims at demonstrating that the approach taken by the European Court of Justice regarding the application of the Internal Market principles (or the market freedoms) to the field of health care services has introduced new values which are more concerned with a libertarian view of health care. Moreover, the paper also addresses the question of how these new (...) values introduced by the Court may affect common principles of European health systems, such as equity and accessibility. (shrink)

The study of the neuroscience and genomics of mental illness are increasingly intertwined. This is mostly due to the translation of medical technologies into psychiatry and to technological convergence. This article focuses on psychosis. I argue that the convergence of neuroscience and genomics in the context of psychosis is morally problematic, and that ethics scholarship should go beyond the identification of a number of ethical, legal, and social issues. My argument is composed of two strands. First, I argue that we (...) should respond to technological convergence by developing an integrated, patient-centred approach focused on the assessment of individual vulnerabilities. Responding to technological convergence requires that we integrate insights from several areas of ethics, translate bioethical principles into the mental health context, and proactively try to anticipate future ethical concerns. Second, I argue that a nuanced understanding of the concept of vulnerability might help us to accomplish this task. I borrow Florencia Luna’s notion of ‘layers of vulnerability’ to show how potential harms or wrongs to individuals who experience psychosis can be conceptualised as stemming from different sources, or layers, of vulnerability. I argue that a layered notion of vulnerability might serve as a common ground to achieve the ethical integration needed to ensure that biomedical innovation can truly benefit, and not harm, individuals who suffer from psychosis. (shrink)

The European Union faced high risks from personal data proliferation to individuals’ privacy. Legislation has emerged that seeks to articulate all interests at stake, balancing the need for data flow from EU countries with protecting personal data: the General Data Protection Regulation. One of the mechanisms established by this new law to strengthen the individual’s control over their data is the so-called “right to be forgotten”, the right to obtain from the controller the erasure of records. In gender transition, this (...) right represents a powerful form of control over personal data, especially health data that may reveal a gender with which they do not identify and reject. Therefore, it is pertinent to discern whether the right to have personal data deleted—in particular, health data—is ethically acceptable in gender transition. Towards addressing the ethical dimensions of the right to be forgotten in this case, this study presents relevant concepts, briefly outlines history, ethics and law of records considering the evolution from paper to electronic format, the main aspects of identity construction and gender identity, and explores the relationship between privacy, data protection/information control and identity projection. Also, it discusses in gender transition the relation between “the right to self-determination”, “the right to delete”, and “the right to identity and individuality”. Conclusions on the ethical admissibility of the ‘right to be forgotten’ to control gender-affirming information are presented. (shrink)

Within the world of pharmacology, the male body has traditionally been taken as the biological norm. Coupled with this, concern about danger to the unborn foetus has meant that, until very recently, ‘women of childbearing potential’ were routinely excluded from most of the early phases of clinical drug testing. Consequently, most drugs tested during Phase I trials were initially carried out on healthy male volunteers. During subsequent phases when drugs were tested on patients, women remained largely under-represented. As a result, (...) some drugs prescribed for women have later been discovered to be lacking in efficacy, and women are more likely to suffer adverse drug reactions than men. The exclusion of women during the early phases of clinical drug trials has now been lifted and drugs are currently being more widely tested on women. This paper examines the differing political and ethical positions adopted by the pharmaceutical industry, drug regulators, pharmacologists, women's groups and patient activists in relation to the exclusion and inclusion of women in clinical drug trials. (shrink)

Papers about philosophy, as distinct from papers within it, are like homeopathic medicines – thin in content. We can only hope to provide some substance if we confine ourselves to some particular aspect. The aspect I have chosen to discuss is this. What hope should we have of finding from within this rather curious and academic subject of ours a help in the affairs of life? Could we expect a doctor of philosophy to give practical advice, rather like a medical (...) doctor? (shrink)

This essay is a critique of medical/clinical ethics from the personal perspective of a medical historian in an academic health science centre who has interacted with ethicists. It calls for greater transparency and accountability of ethicists involved in ‘bedside consulting;’ it questions the wisdom of the four principles of biomedical ethics and their American cultural origins with respect to training; challenges the authority of ‘core competencies’ for ethicists as identified by the American Society for Bioethics and Humanities; and muses over (...) the apparent reintroduction of religion into clinical medicine through the medium of bioethics. This essay is designed to provoke reflection on the putative ‘professionalism’ of the consulting ethics enterprise for which educational baselines and curricula are not standardized. By analysing sources such as the professional material communicated by the Canadian Bioethics Society, it also critiques the collective ethical shortcoming... (shrink)

Renewing the deontology tradition of moral obligation requires, especially in relation to catastrophe and disaster, a broader methodological perspective which would enable deontology to transcend its own limits. The demand for pluralistic research approaches brings with challenging requirements that have to be considered when shaping a hybrid moral theory that incorporates a proactive approach. The personalist approach to the individual, based on the principles of integrity, responsibility and solidarity and seeking the wellbeing of a person, may prove inspirational in shaping (...) such a proactive approach. (shrink)

The aim of this essay is to consider how the dominant moral theories can be applied to the discourse of disaster situations. In specific times, specific values take priority. Therefore, this article will consider how moral theory deals with time. Kant’s moral philosophy has influenced ethics enormously, but rejects the idea of a temporal dimension in ethics; consequently, modern ethics has not devoted sufficient attention to the temporal dimension. Nonetheless, Kantian ethics established the basic principles of respect for human beings (...) as ends in themselves, and for autonomy of rational beings; thus it cannot be ignored. In political decision-making, simply having good intentions does not suffice; they must be accompanied by responsibility. Both the ethics of consequentialism and virtue ethics (the virtue of wisdom) deal with responsibility for the future. Hans Jonas developed a concept of responsibility concerned particularly with the risks associated with new technologies and the ethical requirement to avoid disasters. “Uncertainty may be our permanent fate - which has moral consequences” (Jonas). Public policy should be precautionary. The ethics of disaster preparation planning is distinct from the ethics of disaster response planning. (shrink)

Moral theory has generally focused on resolving ethical dilemmas by identifying ethically sound options. Whether the focus is on consequences, duties, principles or virtues, ethical cases are often approached in ways that assume morally sound solutions can be found and followed. Such ‘ideal morality’ assumes that moral goodness is always possible, leaving people confident they have done the right thing. Such an approach becomes inadequate in disaster settings where any good solution is often difficult to see. This paper examines recent (...) work on nonideal moral theory as a useful model for disaster bioethics. This approach views moral dilemmas as situations where no choice is ideal and every option involves some element of unavoidable wrongdoing. Rather than straining for ideal answers, this approach acknowledges that sometimes the lesser of two evils is the best that can be done. Such situations inevitably lead to feelings of regret or guilt, commonly encountered in discussions of disaster bioethics. This paper explores the practical implications of nonideal approaches for disaster responders working in tragic situations. (shrink)

Today, thanks to biomedical technologies advances, some persons with fertility issues can conceive. Transgender persons benefit also from these advances and can not only actualize their self-identified sexual identities but also experience parenthood. Based on clinical multidisciplinary seminars that gathered child psychiatrists and psychoanalysts interested in the fields of assisted reproduction technology and gender dysphoria, philosophers interested in bioethics, biologists interested in ART, and endocrinologists interested in pubertal suppression, we explore how new biotechnical advances, whether in gender transition or procreation, (...) could create new ways to conceive a child possible. After reviewing the various medical/surgical techniques for physical gender transition and the current ART options, we discuss how these new ways for persons to self-actualize and to experience parenthood can not only improve the condition of transgender persons but also introduce some elements of change in the habitual patterns of thinking especially in France. Finally, we discuss the ethical issues that accompany the arrival of these children and provide creative solutions to help society handle, accept, and support the advances made in this area. (shrink)

Background Regarding controversial medical services, many have argued that if physicians cannot in good conscience provide a legal medical intervention for which a patient is a candidate, they should refer the requesting patient to an accommodating provider. This study examines what US physicians think a doctor is obligated to do when the doctor thinks it would be immoral to provide a referral. Method The authors conducted a cross-sectional survey of a random sample of 2000 US physicians from all specialties. The (...) primary criterion variable was agreement that physicians have a professional obligation to refer patients for all legal medical services for which the patients are candidates, even if the physician believes that such a referral is immoral. Results Of 1895 eligible physicians, 1032 (55%) responded. 57% of physicians agreed that doctors must refer patients regardless of whether or not the doctor believes the referral itself is immoral. Holding this opinion was independently associated with being more theologically pluralistic, describing oneself as sociopolitically liberal, and indicating that respect for patient autonomy is the most important bioethical principle in one's practice (multivariable ORs, 1.6–2.4). Conclusions Physicians are divided about a professional obligation to refer when the physician believes that referral itself is immoral. These data suggest there is no uncontroversial way to resolve conflicts posed when patients request interventions that their physicians cannot in good conscience provide. (shrink)

Spies, like soldiers, do a job and employ tactics that need justifying. I offer an argument for how Christian ethics may handle the moral problems of spying and do so by looking at the morally troubling tactics used by spies through the eyes of those who played an important role in shaping Christian theology and philosophy and have become normative in Christian moral thinking on the use of force. I argue that spying may be justifiable when we conceive the profession (...) as a kind of use of force that is governed by the just war criteria. Spying is a particular kind of use of force that takes its moral character from those who authorize it, with what justification, to what ends, and with what methods. Particular attention is given to the tactics of disregarding the rules of war, the telling and living of lies, running covert operations, and assassinating military and political leaders. (shrink)

Subjects of ectogenesis—human beings that are developing in artificial wombs (AWs)—share the same moral status as newborns. To demonstrate this, I defend two claims. First, subjects of partial ectogenesis—those that develop in utero for a time before being transferred to AWs—are newborns (in the full sense of the word). Second, subjects of complete ectogenesis—those who develop in AWs entirely—share the same moral status as newborns. To defend the first claim, I rely on Elizabeth Chloe Romanis’s distinctions between fetuses, newborns and (...) subjects of ectogenesis. For Romanis, the subject of partial ectogenesis ‘is neither a fetus nor a baby’ but is, instead, a ‘new product of human reproduction’. In this essay, I begin by, expanding upon Romanis’s argument that subjects of partial ectogenesis are not fetuses while arguing that those subjects are newborns. Next, I show that the distinction that Romanis draws between subjects of partial ectogenesis and newborns needs to be revised. The former is a kind of the latter. This leads us to an argument that shows why different moral statuses cannot be justifiably assigned to subjects of partial ectogenesis and subjects of complete ectogenesis, respectively. As subjects of partial ectogenesis share the same moral status as newborns, it follows that subjects of complete ectogenesis share the same moral status as newborns as well. I conclude by considering implications that this essay may have for the research and development of AW technology and conceptual links between a subject’s moral status and birth. (shrink)

McCarthy et al.’s proposal gains much of its plausibility by relying on a superficial treatment of justice, human dignity, sin, and the common good within the Christian tradition. Upon closer inspection of what these terms mean within the context of Christianity, it becomes clear that despite using the same phrases (e.g., a commitment to “protecting vulnerable populations,” the goal of “promoting justice,” etc.) contemporary secular bioethical goals are often deeply at odds with goals of Christian bioethics. So, while the authors (...) are right that there is room for dialogue (and even agreement) concerning general moral principles, the process of specification and application of these principles will often be heavily influenced by competing ethical traditions. Such divergent influences will often frustrate cooperative ventures between secular and religious bioethical projects. Thus, when put into action, McCarthy et al.’s proposal will—at best—produce a divided kingdom; one that cannot hope to stand. (shrink)

Some opponents of abortion claim that fetuses are persons from the moment of conception. Following Berg (2017), let us call these individuals “Personhood-At-Conception” (or PAC), opponents of abortion. Berg argues that if fetuses are persons from the moment of conception, then miscarriage kills far more people than abortion. As such, PAC opponents of abortion face the following dilemma: They must “immediately” and “substantially” shift their attention, resources, etc., toward preventing miscarriage or they must admit that they do not actually believe (...) that fetuses are persons from the moment of conception (or, at least, they must recognize that they are not acting in ways that are consistent with this belief). In this essay, I show that Berg’s argument fails at each step. Specifically, after outlining her argument (in section 1), I consider the central claim of Berg’s style of argument: That “miscarriage…is much deadlier than abortion.” In section 2, I argue that this claim is false (when taken literally) and misleading otherwise. In section 3, I show that Berg’s style of argument is identical in structure to a criticism that is sometimes levied against the recent “Black Lives Matter” movement. In the latter context, the argument has been vehemently rejected. I argue that Berg’s style of argument should be rejected for the same reasons. Finally, in section 4, I show that Berg’s suggestion that opponents of abortion should divert “substantial” amounts of money and attention to miscarriage prevention faces two problems. First, these claims are made without any evidence regarding the actual priorities and spending habits of PAC opponents of abortion. If we are told “not enough is being done,” one wonders: What is being done and how much counts as “enough”? Berg gives no answer to either question. Second, even if it is true that opponents of abortion do not pay substantial attention to miscarriage prevention, Berg fails to notice that this may be for good reason. I conclude that PAC opponents of abortion do not face the dilemma that Berg presents. (shrink)

There are numerous ways in which “the particular”—particular individuals, particular ideologies, values, beliefs, and perspectives—are sometimes overlooked, ignored, or even driven out of the healthcare profession. In many such cases, this is bad for patients, practitioners, and the profession. Hence, we should seek to find a place for the particular in health care. Specific topics that I examine in this essay include distribution of health care based on the particular needs of patients, the importance of protecting physicians’ right to conscientious (...) objection, the value in tolerating a plurality of moral and medical perspectives within the field, and more. Ultimately, as the imagery in the essay’s title suggests, I argue that if one cares about the “well-being” of the medical profession, then one should seek to avoid destroying the many diverse and particular entities that constitute it. (shrink)

This case study appeared in full in the last issue of Research Ethics Review : 108). It concerned the supervision of Simon Shaw, a senior radiographer undertaking an MSc, whose research focused on the professional and parental response to fetal tissue abnormalities.

We use the format of a hypothetical case study to review issues related to pharmaceutical product approval and physician prescribing practices. In this case, a new FDA-approved drug is recommended for a patient who subsequently experiences an adverse event that may or may not be related to the prescription. This case raises a number of ethical and legal considerations physicians routinely face when deciding whether to recommend such drugs for their patients. Despite the need for ongoing observation by the regulatory (...) apparatus, physicians should be cognizant of the limitations of the drug approval system and the post-approval prescription drug surveillance system. We discuss physicians’ ethical obligations when faced with a newly approved drug, including seeking out independent sources of learning, reporting adverse effects, and notifying patients about limitations in available knowledge about therapeutic recommendations. (shrink)

The aim of the present article is to contribute empirically derived knowledge about Swedish researchers’ experience of ethical problems, conflicts and dilemmas in their research practice in relation to the ethical vetting legislation and procedure. The study has been carried out using the critical incident technique, with researchers from various disciplines providing examples from their own research practice of problems relating to research ethics. The analysis of the researchers’ responses indicates three phenomena, partly in line with similar studies in other (...) countries: the law of ethical vetting puts limits on the relevant research ethical questions; it is not possible to anticipate all questions of research ethics; and there are consequences to the fact that the boards for ethical vetting ignore problems that fall outside the law. (shrink)

The mental illness of substance dependence or addiction is responsible for major economic, social, and personal costs. If we are to elucidate its etiology, understand its mechanisms, and eventually bring it under control, scientific investigation is essential. Research in animals and humans has enhanced our understanding of this disease through examination of genetic, neurophysiological, biochemical, and behavioral factors. But because animals cannot verbalize their subjective responses to drugs and because significant symptoms of addiction cannot be observed in non-drug-dependent humans, it (...) is not surprising that certain investigations of substance dependence have required the participation of addicted or substance-dependent humans. (shrink)

The mental illness of substance dependence or addiction is responsible for major economic, social, and personal costs. If we are to elucidate its etiology, understand its mechanisms, and eventually bring it under control, scientific investigation is essential. Research in animals and humans has enhanced our understanding of this disease through examination of genetic, neurophysiological, biochemical, and behavioral factors. But because animals cannot verbalize their subjective responses to drugs and because significant symptoms of addiction cannot be observed in non-drug-dependent humans, it (...) is not surprising that certain investigations of substance dependence have required the participation of addicted or substance-dependent humans. (shrink)

Terminally ill elderly and long-term disabled persons under our system of health care are eligible for Medicare and may qualify for the hospice care benefit. Despite such provisions, research shows that individuals still frequently do not receive the health care they need. But, as inadequate as end-of-life care can be for the general population, these inadequacies are exacerbated for individuals incarcerated in U.S. prisons and jails. Although inmates are guaranteed a basic level of health care under the Eighth Amendment and (...) Due Process Clause, they lack the mobility or freedom to choose their health care coverage, and they are dependent on an institutional system for such care. Inside prison, security and access issues affect the care inmates receive. Further, the availability of adequate clinical resources, especially for high-cost procedures, may be problematic in some jurisdictions.In addition to the practical, institutional, and legal barriers to providing and improving general end-of-life care, efforts to improve end-of-life care for prisoners may also encounter a lack of public sympathy. (shrink)

Terminally ill elderly and long-term disabled persons under our system of health care are eligible for Medicare and may qualify for the hospice care benefit. Despite such provisions, research shows that individuals still frequently do not receive the health care they need. But, as inadequate as end-of-life care can be for the general population, these inadequacies are exacerbated for individuals incarcerated in U.S. prisons and jails. Although inmates are guaranteed a basic level of health care under the Eighth Amendment and (...) Due Process Clause, they lack the mobility or freedom to choose their health care coverage, and they are dependent on an institutional system for such care. Inside prison, security and access issues affect the care inmates receive. Further, the availability of adequate clinical resources, especially for high-cost procedures, may be problematic in some jurisdictions.In addition to the practical, institutional, and legal barriers to providing and improving general end-of-life care, efforts to improve end-of-life care for prisoners may also encounter a lack of public sympathy. (shrink)

A right, unlike an interest, is a valid claim, or potential claim, made by a moral agent, under principles that govern both the claimant and the target of the claim. Animals cannot be the bearers of rights because the concept of rights is essentially human; it is rooted in and has force within a human moral world.

Autonomy is a concept that holds much appeal to social and legal philosophers. Within a medical context, it is often argued that it should be afforded supremacy over other concepts and interests. When respect for autonomy merely requires non-intervention, an adult’s right to refuse treatment is held at law to be absolute. This apparently simple statement of principle does not hold true in practice. This is in part because an individual must be found to be competent to make a valid (...) refusal of consent to medical treatment, and capacity to decide is not an absolute concept. But further to this, I argue that there are three relevant understandings of autonomy within our society, and each can demand in differing cases that different courses of action be followed. Judges, perhaps inadvertently, have been able to take advantage of the equivocal nature of the concept to come tacitly to decisions that reflect their own moral judgments of patients or decisions made in particular cases. The result is the inconsistent application of principle. I ask whether this is an unforeseen outcome or if it reflects a wilful disregard for equal treatment in favour of silent moral judgments in legal cases. Whatever the cause, I suggest that once this practice is seen to occur, acceptable justification of it in some cases is difficult to find. (shrink)

This essay examines the fundamental role of veterinarians in companion animal practice by developing the idea of veterinarians as strong advocates for their nonhuman animal patients. While the practitioner-patient relationship has been explored extensively in medical ethics, the relation between practitioner and animal patient has received relatively less attention in the expanding but still young field of veterinary ethics. Over recent decades, social and professional ethical perspectives on human-animal relationships have undergone major change. Today, the essential role of veterinarians is (...) not entirely clear. Furthermore, veterinarians routinely face pressure, often insidious, to refrain from pursuing their patients’ vital interests. In exploring the concept of strong patient advocacy, this essay investigates the increasingly common suggestion that veterinarians have ‘primary obligation’ and ‘first allegiance’ to their animal patients rather than to other parties, such as their clients or employers. The related concept of a fiduciary duty, which is sometimes encountered in medical ethics, is similarly explored as it applies to companion animal practice. The resultant idea of a strong patient advocate places companion animal veterinarians conceptually and ethically close to human health professionals, not least pediatricians. (shrink)

Online exam supervision technologies have recently generated significant controversy and concern. Their use is now booming due to growing demand for online courses and for off-campus assessment options amid COVID-19 lockdowns. Online proctoring technologies purport to effectively oversee students sitting online exams by using artificial intelligence systems supplemented by human invigilators. Such technologies have alarmed some students who see them as a “Big Brother-like” threat to liberty and privacy, and as potentially unfair and discriminatory. However, some universities and educators defend (...) their judicious use. Critical ethical appraisal of online proctoring technologies is overdue. This essay provides one of the first sustained moral philosophical analyses of these technologies, focusing on ethical notions of academic integrity, fairness, non-maleficence, transparency, privacy, autonomy, liberty, and trust. Most of these concepts are prominent in the new field of AI ethics, and all are relevant to education. The essay discusses these ethical issues. It also offers suggestions for educational institutions and educators interested in the technologies about the kinds of inquiries they need to make and the governance and review processes they might need to adopt to justify and remain accountable for using online proctoring technologies. The rapid and contentious rise of proctoring software provides a fruitful ethical case study of how AI is infiltrating all areas of life. The social impacts and moral consequences of this digital technology warrant ongoing scrutiny and study. (shrink)

The use of robots in therapy for children with autism spectrum disorder raises issues concerning the ethical and social acceptability of this technology and, more generally, about human–robot interaction. However, usually philosophical papers on the ethics of human–robot-interaction do not take into account stakeholders’ views; yet it is important to involve stakeholders in order to render the research responsive to concerns within the autism and autism therapy community. To support responsible research and innovation in this field, this paper identifies a (...) range of ethical, social and therapeutic concerns, and presents and discusses the results of an exploratory survey that investigated these issues and explored stakeholders’ expectations about this kind of therapy. We conclude that although in general stakeholders approve of using robots in therapy for children with ASD, it is wise to avoid replacing therapists by robots and to develop and use robots that have what we call supervised autonomy. This is likely to create more trust among stakeholders and improve the quality of the therapy. Moreover, our research suggests that issues concerning the appearance of the robot need to be adequately dealt with by the researchers and therapists. For instance, our survey suggests that zoomorphic robots may be less problematic than robots that look too much like humans. (shrink)

BackgroundThis paper investigates the content of Australian policies that address withholding or withdrawing life-sustaining treatment to analyse the guidance they provide to doctors about the allocation of resources.MethodsAll publicly available non-institutional policies on withholding and withdrawing life-sustaining treatment were identified, including codes of conduct and government and professional organization guidelines. The policies that referred to resource allocation were isolated and analysed using qualitative thematic analysis. Eight Australian policies addressed both withholding and withdrawing life-sustaining treatment and resource allocation.ResultsFour resource-related themes were (...) identified: doctors’ ethical duties to consider resource allocation; balancing ethical obligations to patient and society; fair process and transparent resource allocation; and legal guidance on distributive justice as a rationale to limit life-sustaining treatment.ConclusionOf the policies that addressed resource allocation, this review found broad agreement about the existence of doctors’ duties to consider the stewardship of scarce resources in decision-making. However, there was disparity in the guidance about how to reconcile competing duties to patient and society. There is a need to better address the difficult and confronting issue of the role of scarce resources in decisions about life-sustaining treatment. (shrink)

Complementary and alternative medicines (CAM) have become increasingly popular over recent decades. Within bioethics CAM has so far mostly stimulated discussions around their level of scientific evidence, or along the standard concerns of bioethics. To gain an understanding as to why CAM is so successful and what the CAM success means for health care ethics, this paper explores empirical research studies on users of CAM and the reasons for their choice. It emerges that there is a close connection to fundamental (...) principles of medical ethics. The studies also highlight that CAM’s holistic ontology of health and illness has an empowering effect on people in caring for their health, and on an even deeper level, safeguards against biomedicine’s reducing image of oneself as biological body-machine. The question is raised what lessons bioethics should draw from this emancipatory social movement for its own relationship with biomedicine. (shrink)