This paper explores the use of advance directives in clinical dementia research. The focus is on advance consent to participation of demented patients in non-therapeutic research involving more than minimal risks and/or burdens. First, morally relevant differences between advance directives for treatment and care, and advance directives for dementia research are discussed. Then attention is paid to the philosophical issue of dementia and personal identity, and the implications for the moral authority of research advance directives. Thirdly, a number of practical shortcomings of advance directives for non-therapeutic dementia research are explored and attention is paid to the role of proxies. It is concluded that upon a closer look the initial attractiveness of advance directives for dementia research is lessened, and that it is doubtful whether these instruments can compensate for the lack of subject consent in case of non-therapeutic dementia research involving more than minimal risks and/or burdens for the incompetent demented subject.
Companies are currently marketing personal genome tests directly-to-consumer that provide genetic susceptibility testing for a range of multifactorial diseases simultaneously. As these tests comprise multiple risk analyses for multiple diseases, they may be difficult to evaluate. Insight into morally relevant differences between diseases will assist researchers, healthcare professionals, policy-makers and other stakeholders in the ethical evaluation of personal genome tests.
In this paper, we identify and discuss four disease characteristics - severity, actionability, age of onset, and the somatic/psychiatric nature of disease - and show how these lead to specific ethical issues. By way of illustration, we apply this framework to genetic susceptibility testing for three diseases: type 2 diabetes, age-related macular degeneration and clinical depression. For these three diseases, we point out the ethical issues that are relevant to the question whether it is morally justifiable to offer genetic susceptibility testing to adults or to children or minors, and on what conditions.
We conclude that the ethical evaluation of personal genome tests is challenging, for the ethical issues differ with the diseases tested for. An understanding of the ethical significance of disease characteristics will improve the ethical, legal and societal debate on personal genome testing.
Ethics is the emphasis of our first-year Introduction to Clinical Medicine-1 course. Introduction to Clinical Medicine-1 uses problem-based learning to involve groups of seven to nine students and two facilitators in realistic clinical cases. The cases emphasize ethics, but also include human behaviour, basic science, clinical medicine, and prevention learning issues. Three cases use written vignettes, while the other three cases feature standardized patients. Groups meet twice for each case. In session one, students read the case introduction, obtain data from the written case or standardized patient, identify the case's ethical problems, formulate learning issues, discuss ways to resolve the moral conflicts, and assign research responsibilities. In session two, students discuss their assigned learning issues and specify and justify clinical actions to address the case's ethical dilemmas. Following three cases, groups write an essay discussing what they learned and describing how they would approach and resolve the case's learning issues.
Moral distress in health care has been identified as a growing concern and a focus of research in nursing and health care for almost three decades. Researchers and theorists have argued that moral distress has both short and long-term consequences. Moral distress has implications for satisfaction, recruitment and retention of health care providers and implications for the delivery of safe and competent quality patient care. In over a decade of research on ethical practice, registered nurses and other health care practitioners have repeatedly identified moral distress as a concern and called for action. However, research and action on moral distress has been constrained by lack of conceptual clarity and theoretical confusion as to the meaning and underpinnings of moral distress. To further examine these issues and foster action on moral distress, three members of the University of Victoria/University of British Columbia (UVIC/UVIC) nursing ethics research team initiated the development and delivery of a multi-faceted and interdisciplinary symposium on Moral Distress with international experts, researchers, and practitioners. The goal of the symposium was to develop an agenda for action on moral distress in health care. We sought to develop a plan of action that would encompass recommendations for education, practice, research and policy. The papers in this special issue of HEC Forum arose from that symposium. In this first paper, we provide an introduction to moral distress; make explicit some of the challenges associated with theoretical and conceptual constructions of moral distress; and discuss the barriers to the development of research, education, and policy that could, if addressed, foster action on moral distress in health care practice. The following three papers were written by key international experts on moral distress, who explore in-depth the issues in three arenas: education, practice, research. In the fifth and last paper in the series, we highlight key insights from the symposium and the papers in the series, propose to redefine moral distress, and outline directions for an agenda for action on moral distress in health care.
Moral distress; Healthcare; Ethical practice; Recruitment; Retention
Moral case deliberation (MCD) is a form of clinical ethics support in which the ethicist as facilitator aims at supporting professionals with a structured moral inquiry into their moral issues from practice. Cases often affect clients, however, their inclusion in MCD is not common. Client participation often raises questions concerning conditions for equal collaboration and good dialogue. Despite these questions, there is little empirical research regarding client participation in clinical ethics support in general and in MCD in particular. This article aims at describing the experiences and processes of two MCD groups with client participation in a mental healthcare institution. A responsive evaluation was conducted examining stakeholders’ issues concerning client participation. Findings demonstrate that participation initially creates uneasiness. As routine builds up and client participants meet certain criteria, both clients and professionals start thinking beyond ‘us-them’ distinctions, and become more equal partners in dialogue. Still, sentiments of distrust and feelings of not being safe may reoccur. Client participation in MCD thus requires continuous reflection and alertness on relational dynamics and the quality of and conditions for dialogue. Participation puts the essentials of MCD (i.e., dialogue) to the test. Yet, the methodology and features of MCD offer an appropriate platform to introduce client participation in healthcare institutions.
Moral case deliberation; Client participation; Dialogue; Inclusion; Organization
Moral competence refers to the affective orientation to perform altruistic behaviors and the ability to judge moral issues logically. A five-stage theory of moral development is proposed. Both western and Chinese perspectives are incorporated in the elaboration of the characteristics of each stage. A brief review of the antecedents of moral competence is presented. The relationship between moral competence and adolescent developmental outcomes is also discussed. Some practical ways to promote moral competence are suggested. School-based programs may be effective in the promotion of moral competence provided it is based on all-round or whole-person development and the length of the program should be sufficiently long.
Although morally acceptable in theory, preimplantation genetic diagnosis (PGD) for mitochondrial DNA (mtDNA) disorders raises several ethical questions in clinical practice. This paper discusses the major conditions for good clinical practice. Our starting point is that PGD for mtDNA mutations should as far as possible be embedded in a scientific research protocol. For every clinical application of PGD for mtDNA disorders, it is not only important to avoid a ‘high risk of serious harm' to the future child, but also to consider to what extent it would be possible, desirable and proportional to try to reduce the health risks and minimize harm. The first issue we discuss is oocyte sampling, which may point out whether PGD is feasible for a specific couple. The second issue is whether one blastomere represents the genetic composition of the embryo as a whole – and how this could (or should) be investigated. The third issue regards the cutoff points below which embryos are considered to be eligible for transfer. We scrutinize how to determine these cutoff points and how to use these cutoff points in clinical practice – for example, when parents ask to take more or less risks. The fourth issue regards the number of cycles that can (or should) justifiably be carried out to find the best possible embryo. Fifth, we discuss whether follow-up studies should be conducted, particularly the genetic testing of children born after IVF/PGD. Finally, we offer the main information that is required to obtain a truly informed consent.
ethics; PGD; mitochondrial DNA; genetic testing minors
Ethical controversy over transplantation of human fetal tissue has arisen because the source of tissue is induced abortions. Opposition to such transplants has been based on various arguments, including the following: rightful informed consent cannot be obtained for use of fetal tissue from induced abortions, and fetal tissue transplantation might result in an increase in the number of abortions. These arguments were not accepted by the National Institutes of Health (NIH) Human Fetal Tissue Transplantation Research Panel. The majority opinion of the panel stated that abortion and fetal tissue use are entirely separate issues, and that tissue use is ethically acceptable because it can be morally insulated from the issue of abortion. In support of this view, panel members and others have replied to the arguments put forward by opponents of fetal tissue use. However, replies to the two arguments mentioned above have been unsatisfactory, and the shortcomings of those replies are identified herein. Examination of the arguments pro and con suggests that fetal tissue use cannot be completely insulated from the issue of abortion. Thus, in seeking an ethical justification for fetal tissue transplantation we must consider reasons other than those put forward by the NIH panel. In this paper it is argued that whatever wrong is involved in using fetal tissue from induced abortions must be balanced against the benefits for patients, and it is on this basis that fetal tissue transplantation can be ethically justified.
In order to teach medical students to engage more fully with patients, we offer ethics education as a tool to assist in the management of patient health issues.
We propose that many dilemmas in clinical medicine would benefit by having the doctor embark on an iterative reasoning process with the patient. Such a process acknowledges and engages the patient as a moral agent. We recommend employing Kant’s ethic of respect and a more inclusive definition of patient autonomy drawn from philosophy and clinical medicine, rather than simply presenting dichotomous choices to patients, which represents a common, but often suboptimal, means of approaching both medical and moral concerns.
We describe how more nuanced teaching about the ethics of the doctor–patient relationship might fit into the medical curriculum and offer practical suggestions for implementing a more respectful, morally engaged relationship with patients that should assist them to achieve meaningful health goals.
clinical medicine; education; ethics; clinical; education; teaching; methods; physician–patient relations; ethics; education; medical; undergraduate; morals
This paper argues that the central issue in the abortion debate has not changed since 1967 when the English parliament enacted the Abortion Act. That central issue concerns the moral status of the human fetus. The debate here is not, it is argued, primarily a moral debate, but rather a metaphysical debate and/or a theological debate—though one with massive moral implications. It concerns the nature and attributes that an entity requires to have "full moral standing" or "moral inviolability" including a "right to life". It concerns the question when, in its development from newly fertilised ovum to unequivocally mature, autonomous morally inviolable person does a human being acquire that nature and those attributes, and thus a "right to life". The paper briefly reviews standard answers to these questions, outlining some problems associated with each. Finally there is a brief discussion of one way in which the abortion debate has changed since 1967—notably in the increasingly vociferous claim, especially from disability rights sectors, that abortion on grounds of fetal abnormality implies contempt for and rejection of disabled people—a claim that is rebutted.
Key Words: Abortion • moral status of fetus • abortion of abnormal fetuses
This article is part of a series of papers examining ethical issues in cluster randomized trials (CRTs) in health research. In the introductory paper in this series, Weijer and colleagues set out six areas of inquiry that must be addressed if the cluster trial is to be set on a firm ethical foundation. This paper addresses the third of the questions posed, namely, does clinical equipoise apply to CRTs in health research? The ethical principle of beneficence is the moral obligation not to harm needlessly and, when possible, to promote the welfare of research subjects. Two related ethical problems have been discussed in the CRT literature. First, are control groups that receive only usual care unduly disadvantaged? Second, when accumulating data suggests the superiority of one intervention in a trial, is there an ethical obligation to act?
In individually randomized trials involving patients, similar questions are addressed by the concept of clinical equipoise, that is, the ethical requirement that, at the start of a trial, there be a state of honest, professional disagreement in the community of expert practitioners as to the preferred treatment. Since CRTs may not involve physician-researchers and patient-subjects, the applicability of clinical equipoise to CRTs is uncertain. Here we argue that clinical equipoise may be usefully grounded in a trust relationship between the state and research subjects, and, as a result, clinical equipoise is applicable to CRTs. Clinical equipoise is used to argue that control groups receiving only usual care are not disadvantaged so long as the evidence supporting the experimental and control interventions is such that experts would disagree as to which is preferred. Further, while data accumulating during the course of a CRT may favor one intervention over another, clinical equipoise supports continuing the trial until the results are likely to be broadly convincing, often coinciding with the planned completion of the trial. Finally, clinical equipoise provides research ethics committees with formal and procedural guidelines that form an important part of the assessment of the benefits and harms of CRTs in health research.
To demonstrate that sensory and emotional states play an important role in moral processing, previous research has induced physical disgust in various sensory modalities (visual, tactile, gustatory, and olfactory modalities, among others) and measured its effects on moral judgment. To further assess the strength of the connection between embodied states and morality, we investigated whether the directionality of the effect could be reversed by exposing participants to different types of moral events prior to rating the same neutral tasting beverage. As expected, reading about moral transgressions, moral virtues, or control events resulted in inducing gustatory disgust, delight, or neutral taste experiences, respectively. Results are discussed in terms of the relation between embodied cognition and processing abstract conceptual representations.
The issue of aftercare for participants in clinical research was explored in the context of an asthma drug trial. Although there may be financial constraints and practical difficulties with implementation, the results show that it may be feasible for clinical investigators and commercial sponsors to take on some limited responsibility for the medical care of research subjects after clinical trials. However, the ethical implications for this practice remain unclear. On the one hand, society may have a moral obligation to compensate and reward some of its members who assume the risk of research subjects for the benefit of society as a whole. On the other hand, the promise of aftercare may provide an inducement to volunteers which, under certain conditions may be considered morally wrong and scientifically unsound.
Researchers have proposed that females and males differ in the structure of their moral attitudes, such that females tend to adopt care-based moral evaluations and males tend to adopt justice-based moral evaluations. The existence of these gender differences remains a controversial issue, as behavioral studies have reported mixed findings. The current study investigated the neural correlates of moral sensitivity in females and males, to test the hypothesis that females would show increased activity in brain regions associated with care-based processing (posterior and anterior cingulate, anterior insula) relative to males when evaluating moral stimuli, and males would show increased activity in regions associated with justice-based processing (superior temporal sulcus) relative to females. Twenty-eight participants (14 females) were scanned using fMRI while viewing unpleasant pictures, half of which depicted moral violations, and rated each picture on the degree of moral violation that they judged to be present. As predicted, females showed a stronger modulatory relationship between posterior cingulate and insula activity during picture viewing and subsequent moral ratings relative to males. Males showed a stronger modulatory relationship between inferior parietal activity and moral ratings relative to females. These results are suggestive of gender differences in strategies utilized in moral appraisals.
gender; moral sensitivity; posterior cingulate; anterior insula
Moral reasoning is important for developing medical professionalism but current evidence for the relationship between education and moral reasoning does not clearly apply to medical students. We used a combined study design to test the effect of clinical teaching on moral reasoning.
We used the Defining Issues Test-2 as a measure of moral judgment, with 3 general moral schemas: Personal Interest, Maintaining Norms, and Postconventional Schema. The test was applied to 3 consecutive cohorts of second year students in 2002 (n = 207), 2003 (n = 192), and 2004 (n = 139), and to 707 students of all 6 study years in 2004 cross-sectional study. We also tested 298 age-matched controls without university education.
In the cross-sectional study, there was significant main effect of the study year for Postconventional (F(5,679) = 3.67, P = 0.003) and Personal Interest scores (F(5,679) = 3.38, P = 0.005). There was no effect of the study year for Maintaining Norms scores. 3rd year medical students scored higher on Postconventional schema score than all other study years (p<0.001). There were no statistically significant differences among 3 cohorts of 2nd year medical students, demonstrating the absence of cohort or point-of-measurement effects. Longitudinal study of 3 cohorts demonstrated that students regressed from Postconventional to Maintaining Norms schema-based reasoning after entering the clinical part of the curriculum.
Our study demonstrated direct causative relationship between the regression in moral reasoning development and clinical teaching during medical curriculum. The reasons may include hierarchical organization of clinical practice, specific nature of moral dilemmas faced by medical students, and hidden medical curriculum.
The moral status of the human embryo has gained much attention in debates over the acceptability, or otherwise, of human embryonic stem cell research. Far less attention has been paid to the suppliers of those embryos: people who have undergone IVF treatment to produce embryos to assist them to have a baby. It is sociologically and ethically important to understand their views and experiences of being asked to donate embryos for research if we are to fully understand the wider social and regulatory aspects of hESC science. This paper reports on parallel studies investigating these issues in the UK and in Switzerland. The studies reveal the inextricable entangling of the social and moral status of embryos. Since donors participate in different discursive domains and contexts (public, clinic, family) that shape their perception of “what” an embryo is, their views of embryos embody conflicting ideas and ambivalences.
embryos; comparative research; donors’ views; hESC research
Bariatric surgery for children and adolescents is becoming widespread. However, the evidence is still scarce and of poor quality, and many of the patients are too young to consent. This poses a series of moral challenges, which have to be addressed both when considering bariatric surgery introduced as a health care service and when deciding for treatment for young individuals. A question based (Socratic) approach is applied to reveal underlying moral issues that can be relevant to an open and transparent decision making process.
A wide range of moral issues with bariatric surgery for children and adolescents is identified in the literature. There is a moral imperative to help obese minors avoiding serious health problems, but there is little high quality evidence on safety, outcomes, and cost-effectiveness for bariatric surgery in this group. Lack of maturity and family relations poses a series of challenges with autonomy, informed consent, assent, and assessing the best interest of children and adolescents. Social aspects of obesity, such as medicalization, prejudice, and discrimination, raise problems with justice and trust in health professionals. Conceptual issues, such as definition of obesity and treatment end-points, present moral problems. Hidden interests of patients, parents, professionals, industry, and society need to be revealed.
Performing bariatric surgery for obese children and adolescents in order to discipline their behavior warrants reflection and caution. More evidence on outcomes is needed to be able to balance benefits and risks, to provide information for a valid consent or assent, and to advise minors and parents.
Bariatric surgery; Children; Adolescents; Ethics; Moral
Medical anthropological research on science, biotechnology, and religion has focused on the “local moral worlds” of men and women as they make difficult decisions regarding their health and the beginnings and endings of human life. This paper focuses on the local moral worlds of infertile Muslims as they attempt to make, in the religiously correct fashion, Muslim babies at in vitro fertilization (IVF) clinics in Egypt and Lebanon. As early as 1980, authoritative fatwas issued from Egypt’s famed Al-Azhar University suggested that IVF and similar technologies are permissible as long as they do not involve any form of third-party donation (of sperm, eggs, embryos, or uteruses). Since the late 1990s, however, divergences in opinion over third-party gamete donation have occurred between Sunni and Shi’ite Muslims, with Iran’s leading ayatollah permitting gamete donation under certain conditions. This Iranian fatwa has had profound implications for the country of Lebanon, where a Shi’ite majority also seeks IVF services. Based on three periods of ethnographic research in Egyptian and Lebanese IVF clinics, this paper explores official and unofficial religious discourses surrounding the practice of IVF and third-party donation in the Muslim world, as well as the gender implications of gamete donation for Muslim marriages.
In vitro fertilization; gamete donation; Islam; medical anthropology; Middle East
A pressing and difficult practical problem concerns the general issue of the right social response to offenders classified as having antisocial personality disorder. This paper approaches this general problem by focusing, from a philosophical perspective, on the still relevant but more approachable question whether psychopathic offenders are morally responsible. In particular, I investigate whether psychopaths possess moral understanding.
A plausible way to approach the last question requires a satisfactory philosophical interpretation of the empirical evidence that appears to show that psychopaths fail to draw the distinction between conventional and moral norms. Specifically, I will consider a recent philosophical debate polarized between supporters of rationalist and sentimentalist accounts of moral understanding. These opponents have discussed whether the case of psychopathy offers empirical support for their account and undermine the rival view. I will argue that the available empirical data leave the outcome of this discussion indeterminate. However, this implies that both these principal theories of moral understanding, if independently motivated, would imply that psychopaths have certain deficits that might affect their moral understanding and, consequently, their moral responsibility.
psychopathy; moral responsibility; moral understanding; rationalism; sentimentalism; psychology of moral understanding; conventional/moral norms
In contrast to other articles in this series on the history of moral philosophy the present essay is not devoted to expounding the views of a single author, or to examining a particular moral theory. Instead it discusses an important dispute between two medieval accounts of the relation between theological and moral propositions. In addition to its historical interest this debate is important both because it connects earlier and later ethical thought--being influenced by Greek moral theories and influencing subsequent European philosophy--and because it concerns issues that remain important to philosophers and to those who claim that their ethical beliefs are dictated by religious convictions.
Researchers have the potential to utilize genetic modification (GM) technologies to create a hybrid of “food” and “medicine” that may challenge traditional understandings of what is “natural”. Moral and ethical concerns are likely to arise in any discussion of these therapeutic foods and will affect the integration of products into clinical care and daily life. This study examined how patients with chronic gastrointestinal (GI) diseases view probiotics as future bioengineered therapeutic foods.
A multi-site qualitative study consisting of focus groups with chronic GI diseases was conducted at Cleveland Clinic, Mayo Clinic, and Johns Hopkins University
We conducted twenty-two focus groups with 136 patients with major GI diseases between March and August 2009. GI patients associated the term “natural” with concepts of diminished risk and morally “good”; conversely, patients associated the term “unnatural” with things that are “risky,” “foreign”, and morally “bad”. Readily available unmodified probiotics were more commonly described as “natural” while genetically modified probiotics were more commonly labeled as “unnatural” and “risky”. However, patients acknowledged that not all natural products are safe, nor are unnatural products always harmful.
If GI patient perspectives are indicative of public perceptions of therapeutic foods, our findings suggest that the potential benefits and risks of clinical and public health initiatives employing therapeutic foods will be understood in moralistic terms. Bioethicists and others should be sensitive to the implicit normative appeals that are often embedded in the language of what is “natural” and “unnatural”.
Probiotics; bioethics; empirical research; qualitative research; metagenomics
In recent time there has been ample discussion concerning censorship of research conducted in two labs involved in avian influenza virus research. Much of the debate has centered on the question whether the methods and results should reach to open disclosure given the “dual use” nature of this research which can be used for nefarious purposes.
This paper reviews the discussion to date but centers on epistemological issues associated with initial justification of this research and what this entails for continuation of this research despite US governmental biosecurity concerns. The question here is whether there was reasonable moral warrant for genetic alteration of the H5N1 influenza virus.
The paper concludes with philosophical (ethical) justification for continuation of this research.
Influenza; Fouchier; Kawaoka; NSABB; H5N1; Ethics
Randomization is the “gold standard” design for clinical research trials, and is accepted as the best way to reduce bias. Although some controversy remains over this matter, we believe equipoise is the fundamental ethical requirement for conducting a randomized clinical trial. Despite much attention to the ethics of randomization, the moral psychology of this study design has not been explored. This paper analyzes the ethical tensions that arise from conducting these studies, and examines the moral psychology of this design from the perspectives of physician-investigators and patient-subjects. We conclude with a discussion of the practical implications of this analysis.
clinical trials; human subjects; randomization; equipoise; clinical trials; moral psychology
Social competence is defined in terms of interpersonal relationships, self and group identities, and development of citizenship. While the focus of the author's previous research is on relationship and identity, the main focus of this paper is on the development of citizenship. A 4-stage developmental model of citizenship is proposed. A brief discussion of the educational implication of each of the stages is presented. The issues concerning the assessment of social competence are clearly delineated, and the discussion serves as a basis for future studies. Finally, five current issues concerning the launch of the “Moral and National Education (MNE) Subject” in Hong Kong primary and secondary schools are discussed.
The ethical dimension of treating the elderly, including risk–benefit analysis, focuses mainly on quality of life and end-of-life issues. These include arguments on advance directives and the concept of extraordinary treatments. This paper looks more closely at the philosophical approach to aging in order to address questions on the direction of research and issues such as longevity and social construction of the aging process. It is the way society moves to understand the value-laden choices on aging that directs the goals of treatment and research. Whilst these vary culturally, one has to reckon with a postmodern view of aging which may, in turn, reflect on the course of action of future care and research in aging. The paper canvasses how, in reality, four principles act as guidelines for moral discourse, and discusses how changing values in society decide this course of action.
aging; principles; decision-making; conflict; treatment; clinical decision-making; social construction