Dealing with situations where parents’ views about treatment for their child are strongly opposed to doctors’ views is one major area of ethical challenge in paediatric health care. The traditional approach focuses on the child’s best interests, but this is problematic for a number of reasons. The Harm Principle test is regarded by many ethicists as more appropriate than the best interests test. Despite this, use of the best interests test for intervening in parental decisions is still very common in (...) clinical settings and can lead to confusion. In this paper, I propose the Zone of Parental Discretion as a means of putting into practice the key ideas of the Harm Principle, in a clear, step-by-step process. The Zone of Parental Discretion provides a tool for ethical deliberation by clinicians and ethicists about all situations in which parents and doctors disagree about treatment of a child, whether parents are refusing medically recommended treatment, or requesting non-recommended treatment. (shrink)

Holobionts are multicellular eukaryotes with multiple species of persistent symbionts. They are not individuals in the genetic sense— composed of and regulated by the same genome—but they are anatomical, physiological, developmental, immunological, and evolutionary units, evolved from a shared relationship between different species. We argue that many of the interactions between human and microbiota symbionts and the reproductive process of a new holobiont are best understood as instances of reciprocal scaffolding of developmental processes and mutual construction of developmental, ecological, and (...) evolutionary niches. Our examples show that mother, fetus, and different symbiotic microbial communities induce or constitute conditions for the development and reproduction of one another. These include the direct induction of maternal or fetus physiological changes, the restructuring of ecological relations between communities, and evolutionary selection against undesirable competitors. The mutual scaffolding and niche constructing processes start early—prior to amniotic rupture. We are evolutionarily, physiologically, and developmentally integrated holobiont systems, strung together through mutual reliance and mutual construction. Bringing the processes of niche construction and developmental scaffolding together to interpret holobiont birth conceptually scaffolds two new directions for research: in niche construction, identifying the evolutionary implications of organisms actively constructing multiple overlapping niches and scaffolds, and in Evolutionary Developmental Biology, characterizing evolutionary and ecological processes as developmental causes. (shrink)

There is a growing call for greater public involvement in establishing science and technology policy, in line with democratic ideals. A variety of public participation procedures exist that aim to consult and involve the public, ranging from the public hearing to the consensus conference. Unfortunately, a general lack of empirical consideration of the quality of these methods arises from confusion as to the appropriate benchmarks for evaluation. Given that the quality of the output of any participation exercise is difficult to (...) determine, the authors suggest the need to consider which aspects of the process are desirable and then to measure the presence or quality of these process aspects. To this end, a number of theoretical evaluation criteria that are essential for effective public participation are specified. These comprise two types: acceptance criteria, which concern features of a method that make it acceptable to the wider public, and process criteria, which concern features of the process that are liable to ensure that it takes place in an effective manner. Future research needs to develop instruments to measure these criteria more precisely and identify the contextual and environmental factors that will mediate the effectiveness of the different participation methods. (shrink)

Imprecise definition of key terms in the “public participation” domain have hindered the conduct of good research and militated against the development and implementation of effective participation practices. In this article, we define key concepts in the domain: public communication, public consultation, and public participation. These concepts are differentiated according to the nature and flow of information between exercise sponsors and participants. According to such an information flow perspective, an exercise’s effectiveness may be ascertained by the efficiency with which full, (...) relevant information is elicited from all appropriate sources, transferred to all appropriate recipients, and combined to give an aggregate/consensual response. Key variables that may theoretically affect effectiveness—and on which engagement mechanisms differ—are identified and used to develop a typology of mechanisms. The resultant typology reveals four communication, six consultation, and four participation mechanism classes. Limitations to the typology are discussed, and future research needs identified. (shrink)

SummaryA sample of 104 British parents with criminal convictions had an average fertility of 3·91 children as compared with 2·21 for the general population. The result suggests that fertility for criminal behaviour is dysgenic involving an increase in the genes underlying criminal behaviour in the population.

Transcending the various formal concepts of life, this captivating book offers a unique overview of life's history, essences, and future. "A masterpiece of scientific writing. You will cherish "What Is Life?" because it is so rich in poetry and science in the service of profound philosophical questions".--Mitchell Thomashow, "Orion". 9 photos. 11 line illustrations.

The University of Pittsburgh Medical Center (UPMC) "Policy for the Management of Terminally Ill Patients Who May Become Organ Donors after Death" proposes to take organs from certain patients as soon as possible after expected cardiopulmonary death. This policy requires clear understanding of the descriptive state of the donor's critical cardiopulmonary and neurologic functional capacity at the time interventions to sustain or harvest organs are undertaken. It also requires strong consensus about the moral and legal status of the donor during (...) dying and confirmation of death. There has been no need for the clarity and precision that this policy relies upon, and thus the needed research and conceptual work has not previously been generated. The empiric base and societal consensus are both too frail to provide justification for this policy at this time. (shrink)

Women’s health activists laid the groundwork for passage of the law that created the U.S. Food and Drug Administration in 1906. The pharmaceutical and food industries fought regulatory reforms then and continue to do so now. We examine public health activism in the Progressive Era, the postwar era and the present day. The women’s health movement began in the 1960s, and criticized both the pharmaceutical industry and the medical establishment. In the 1990s, patient advocacy groups began accepting industry funds; thousands (...) of commercially-funded groups now dominate the advocacy landscape. As pharma funding became normalized, concerns arose regarding a) the lack of transparency and public accountability regarding funding, b) the distortion of groups’ agendas, and c) the ability of pharma-funded groups to dominate the discourse and override less well-resourced patient and health advocacy groups. Although industry-funded groups argue that funding allows them to provide useful services, the trade-off in health risks, exorbitant prices and distorted information is far too high. Sincerity is beside the point; patients and the industry have differing interests when it comes to drug safety and efficacy, drug information and drug prices. A growing resistance movement is asserting the values of its activist predecessors and opposing the prevailing culture of pharma-funded advocacy. (shrink)

Recent years have witnessed a growing concern that terminally illpatients are needlessly suffering in the dying process. This has ledto demands that physicians become more attentive in the assessment ofsuffering and that they treat their patients as `whole persons.'' Forthe most part, these demands have not fallen on deaf ears. It is nowwidely accepted that the relief of suffering is one of the fundamentalgoals of medicine. Without question this is a positive development.However, while the importance of treating suffering has generally (...) beenacknowledged, insufficient attention has been paid to the question ofwhether different types of terminal suffering require differnt responsesfrom health care professionals. In this paper we introduce a distinctionbetween two types of suffering likely to be present at the end of life,and we argue that physicians must distinguish between these types if theyare to respond appropriately to the suffering of their terminally illpatients. After introducing this distinction and explaining its basis,we further argue that the distinction informs a (novel) principle ofproportionality, one that should guide physicians in balancing theircompeting obligations in responding to terminal suffering. As weexplain, this principle is justified by reference to the intereststerminally ill patients have in restoration, as well as in therelief of suffering, at the end of life. (shrink)

Nurses are encountering an increasing number of ethical dilemmas in clinical practice. Ethics courses for baccalaureate nursing students provide the opportunity for the development of critical thinking skills in order to deal with these effectively. The purpose of this descriptive qualitative study was to describe ethical reasoning in 70 baccalaureate nursing students enrolled in a nursing ethics course. Reflective clinical journals were analyzed as appropriate for qualitative inquiry. The overriding theme emerging from the data was `in the process of becoming', (...) which includes: practicing as a professional, lacking the confidence as a student nurse to take an ethical stand, advocating for patients, being just in the provision of care, identifying the spiritual dimensions of nursing practice, confronting the `real world' of health care, making a commitment to practice with integrity, and caring enough to care. The development of critical thinking and ethical reasoning within the framework of knowing and connecting is essential in nursing education. (shrink)

The concept of “public participation” is currently one of great interest to researchers and policy makers. In response to a perceived need for greater public involvement in decision making and policy formation processes on the part of both policymakers and the general public, a variety of novel mechanisms have been developed, such as the consensus conference and citizens jury, to complement traditional mechanisms, such as the public meeting. However, the relative effectiveness of the various mechanisms is unclear, as efforts at (...) evaluation have been sparse. In this article, the authors describe an evaluation of a two-day “deliberative conference” on the topic of radiation dose assessment. The authors detail the evaluation framework that they adopt and describe the instruments that they have developed to determine the attainment of the evaluationcriteria stipulated in that framework. They then describe the participation exercise that they have evaluated. Finally, they apply the instruments to assess the effectiveness of the exercise, and discuss the results and their implications for the conduct of evaluations and the use of this particular participation mechanism. (shrink)

Moral distress is a phenomenon that has been receiving increasing attention in nursing and other health care disciplines. Moral distress is a concept that entered the nursing literature – and subsequently the health care ethics lexicon – in 1984 as a result of the work done by American philosopher and bioethicist Andrew Jameton. Over the past decade, research into moral distress has extended beyond the profession of nursing as other health care disciplines have come to question the impact of moral (...) constraint on individual practitioners, professional practice, and patient outcomes. Along with increased interest in the phenomenon of moral distress have come increasing critiques – critiques that in their essence point to a serious lack of conceptual clarity in the definition, study, and application of the concept. Foundational to gaining conceptual clarity in moral distress in order to develop strategies to prevent and ameliorate the experience is a careful revisiting of the epistemological assumptions underpinning our knowledge and use of the concept of moral distress. It is our contention that the conceptual challenges reveal flaws in the original understanding of moral distress that are based on an epistemological stance that holds a linear conception of cause and effect coupled with a simplistic perspective of ‘constraint’ and ‘agency’. We need a more nuanced approach to our study of moral distress such that our ontological and epistemological stances help us to better appreciate the complexity of moral agents acting in organizational contexts. We believe that critical realism offers such a nuanced approach. (shrink)

The author has previously shown that for a certain class of structures $\mathcal {I}$, $\mathcal {I}$-indexed indiscernible sets have the modeling property just in case the age of $\mathcal {I}$ is a Ramsey class. We expand this known class of structures from ordered structures in a finite relational language to ordered, locally finite structures which isolate quantifier-free types by way of quantifier-free formulas. This result is applied to give new proofs that certain classes of trees are Ramsey. To aid this (...) project we develop the logic of EM-types. (shrink)

This Hypatia cluster aims to create space for sharing stories and tools designed to support situated, embodied, and dialogical philosophical activism. It emerges from a new generation of pragmatist feminists, illustrating how the field has evolved. These pieces locate pragmatist feminism in place- and issue-based philosophical activism. As an activist and pragmatically grounded philosophy, this approach values the embodied and relational nature of social change as well as the need to create multiple pathways of engagement situated in and across communities.

We all seem to think that we do the acts we do because we consciously choose to do them. This commonsense view is thrown into dispute by Benjamin Libet's eyebrow-raising experiments, which seem to suggest that conscious will occurs not before but after the start of brain activity that produces physical action.

Neuroethics, in its modern form, investigates the impact of brain science in four basic dimensions: the self, social policy, practice and discourse. In this study, we analyzed a set of 461 peer-reviewed articles with neuroethics content, published by authors from 32 countries. We analyzed the data for: (1) trends in the development of international neuroethics over time, and (2) how challenges at the intersection of ethics and neuroscience are viewed in countries that are considered developed by International Monetary Fund (IMF) (...) standards, and in those that are developing. Our results demonstrate a steady increase in global participation in neuroethics from 1989 to 2005, characterized by an increase in numbers of articles published specifically on neuroethics, journals publishing these articles, and countries contributing to the literature. The focus from all countries was on the practice of brain science and the amelioration of neurological disease. Indicators of technology creation and diffusion in developing countries were specifically correlated with increases in publications concerning policy implications of brain science. Neuroethics is an international endeavor and, as such, should be sensitive to the impact that context has on acceptance and use of technological innovation. (shrink)

Cognitive Science, Volume 46, Issue 1, January 2022.

The Daily Spiritual Experience Scale is an instrument designed to provide researchers with a self-report measure of spiritual experiences as an important aspect of how religiousness/spirituality is expressed in daily life for many people. The sixteen-item scale includes constructs such as awe, gratitude, mercy, sense of connection with the transcendent, compassionate love, and desire for closeness to God. It also includes measures of awareness of discernment/inspiration and transcendent sense of self. This measure was originally developed for use in health studies, (...) but has been increasingly used more widely in the social sciences, for program evaluation, and for examining changes in religious/spiritual experiences over time. It has been included on the U. S. General Social Survey , and the items have shown high prevalence in that population. The challenge of identifying items that tap the underlying constructs was addressed through qualitative methods, both in the development and testing of the instrument. Translations have been made into Spanish, Korean, Hebrew, Vietnamese, and French, and the scale has been effectively used outside the United States. Detailed discussion of item construction based on qualitative work is given to assist in use, interpretation and translation development. Options for scoring and suggestions for exploring correlations with other variables using individual items and subgroups are also presented. (shrink)

ABSTRACT When applying moral principles to concrete cases, we assume a background shared understanding of the boundaries of the persons to whom the principles apply. In most contexts, this assumption is unproblematic. However, in end‐of‐life contexts, when patients are receiving ‘artificial’ life‐support, judgments about where a person's self begins and ends can become controversial. To illustrate this possibility, this paper presents a case in which a decision must be made whether to deactivate a patient's pacemaker as a means to hasten (...) his death. After discussing some common moral principles that are often applied to resolve ethical problems at the end of life and after explaining why they are of no help here, the paper argues that the correct analysis of this case, and of cases of this sort, turns on considerations that relate to the constitution of the self. These considerations, the paper further argues, sometimes resist resolution. The constitution of the self is fixed in large measure by our concepts and social conventions, and these do not always provide determinate grounds for delimiting the boundaries of the self. (shrink)

Supply-side interventions such as prescription drug monitoring programs, “pill mill” laws, and dispensing limits have done little to quell the burgeoning opioid crisis. An increasingly popular demand-side alternative to these measures – now adopted by 38 jurisdictions in the USA and 7 provinces in Canada — is court-mandated involuntary commitment and treatment. In Massachusetts, for example, Part I, Chapter 123, Section 35 of the state's General Laws allows physicians, spouses, relatives, and police officers to petition a court to involuntarily commit (...) and treat a person whose alcohol or drug abuse poses a likelihood of serious harm. This paper explores the ethical underpinnings of this law as a case study for others. First, we highlight the procedural and substantive standards of Section 35 and evaluate the application of the law in practice, including the frequency with which it has been invoked and outcomes. We then use this background to inform an ethical critique of the law. Specifically, we argue that the infringement of autonomy and privacy associated with involuntary intervention under Section 35 is not currently justified on the grounds of a lack of evidenced benefits and a risk of significant of harm. Further ethical concerns also arise from a lack of standard of care provided under the Section 35 pathway. Based on this analysis, we advance four recommendations for change to mitigate these ethical shortcomings. (shrink)

Ethical research on human subjects requires that subjects, if they have the capacity to do so, give free and informed consent to participate in the trials in which they are enrolled. This requirement, which is commonly referred to as the principle of informed consent, was prominently endorsed by the authors of the Belmont Report in 1978, and it remains widely accepted today. Yet while the principle of informed consent is by now almost universally accepted, the responsibilities that it imposes on (...) those who conduct research on human subjects is a more contentious matter. New challenges to securing informed consent have emerged since the publication of the Belmont Report, and responding to these challenges requires... (shrink)

Unrealistic optimism is a bias that leads people to believe, with respect to a specific event or hazard, that they are more likely to experience positive outcomes and/or less likely to experience negative outcomes than similar others. The phenomenon has been seen in a range of health-related contexts—including when prospective participants are presented with the risks and benefits of participating in a clinical trial. In order to test for the prevalence of unrealistic optimism among participants of early-phase oncology trials, we (...) conducted a survey with patients over 18 years of age who were enrolled in a phase I, phase I/II, or phase II clinical cancer trial in the New York City area between August 2008 and October 2009. Participants in our study were asked to compare their own chances of experiencing a range of risks and benefits related to the trial they were enrolled in with the chances of the other trial participants. We found a significant optimistic bias in their responses. Respondents tended to overestimate the benefits of the trial they were enrolled in and underestimate its risks. In addition, we found no significant relationship between respondents’ understanding of the trial’s purpose and how susceptible they were to unrealistic optimism. Our findings suggest that improving the consent process for oncology studies requires more than addressing deficits in understanding. (shrink)

Drawing the line on physician assistance in physician-assisted death (PAD) continues to be a contentious issue in many legal jurisdictions across the USA, Canada and Europe. PAD is a medical practice that occurs when physicians either prescribe or administer lethal medication to their patients. As more legal jurisdictions establish PAD for at least some class of patients, the question of the proper scope of this practice has become pressing. This paper presents an argument for restricting PAD to the terminally ill (...) that can be accepted by defenders as well as critics of PAD for the terminally ill. The argument appeals to fairness-based paternalism and the social meaning of medical practice. These two considerations interact in various ways, as the paper explains. The right way to think about the social meaning of medical practice bears on fair paternalism as it relates to PAD and vice versa. The paper contends that these considerations have substantial force when directed against proposals to extend PAD to non-terminally ill patients, but considerably less force when directed against PAD for the terminally ill. The paper pays special attention to the case of non-terminally ill patients who suffer from treatment-resistant depression, as these patients present a potentially strong case for extending PAD beyond the terminally ill. (shrink)

Following A.N. Whitehead’s rhythm of education, the author provides a guide for parents and educators on raising children to thrive in times of tempestuous change. Each chapter presents exemplary educational events rich in context, and then draws on seminal research to ground her recommendations in a robust theoretical foundation.

In recent years, a number of writers have proposed voluntary stopping of eating and drinking as an alternative to physician-assisted suicide. This paper calls attention to and discusses some of the ethical complications that surround the practice of voluntary stopping of eating and drinking. The paper argues that voluntary stopping of eating and drinking raises very difficult ethical questions. These questions center on the moral responsibility of clinicians who care for the terminally ill as well as the nature and limits (...) of the authority they exercise over them. (shrink)

Rudolf Leuckart’s 1851 pamphlet Ueber den Polymorphismus der Individuen stood at the heart of naturalists’ discussions on biological individuals, parts and wholes in mid-nineteenth-century Britain and Europe. Our analysis, which accompanies the first translation of this pamphlet into English, situates Leuckart’s contribution to these discussions in two ways. First, we present it as part of a complex conceptual knot involving not only individuality and the understanding of compound organisms, but also the alternation of generations, the division of labor in nature, (...) and the possibility of finding general laws of the organic world. Leuckart’s pamphlet is important as a novel attempt to give order to the strands of this knot. It also solved a set of key biological problems in a way that avoided some of the drawbacks of an earlier teleological tradition. Second, we situate the pamphlet within a longer trajectory of inquiry into part-whole relations in biology from the mid-eighteenth century to the present. We argue that biological individuality, along with the problem-complexes with which it engaged, was as central a problem to naturalists before 1859 as evolution, and that Leuckart’s contributions to it left a long legacy that persisted well into the twentieth century. As biologists’ interests in part-whole relations are once again on the upswing, the longue durée of this problem merits renewed consideration. (shrink)

In theory, HREC members should use the ethical guidelines in the National Statement on the Ethical Conduct of Research Involving Humans as the basis for their decisions, and researchers should design their research in accordance with these guidelines However, very little is known about what researchers and HREC members actually do in practice. In this paper, we report some of the key findings of the study “Human Research Ethics in Practice”, a qualitative interview-based study of health researchers and HREC members (...) in Victoria. The findings shed light on how researchers and HREC members conceptualise ethics, how they use the National Statement, and what deliberative strategies they employ to assess the ethical appropriateness of research studies. The findings also reveal differences and similarities between health researchers’ and HREC members’ perceptions of the roles of HRECs, and point to some sources of misunderstanding and tension. We examine the implications of some of these findings for the ways in which HRECs carry out their task, and research institutions support and promote ethical conduct in research amongst their staff and students. The focus of this study is on health research, but we suggest that the findings are highly relevant to all other research areas where human participants are involved. (shrink)

BackgroundFor children with life-limiting conditions who are unable to participate in decision-making, decisions are made for them by their parents and paediatricians. Shared decision-making is widely recommended in paediatric clinical care, with parents preferring a collaborative approach in the care of their child. Despite the increasing emphasis to adopt this approach, little is known about the roles and responsibilities taken by parents and paediatricians in this process. In this study, we describe how paediatricians approach decision-making for a child with a (...) life-limiting condition who is unable to participate in decision-making for his/herself.MethodsThis qualitative phenomenological study involved 25 purposively sampled paediatricians. Verbatim transcripts from individual semi-structured interviews, conducted between mid-2019 and mid-2020, underwent thematic analysis. Interviews were based around a case vignette matched to the clinical experience of each paediatrician.ResultsTwo key themes were identified in the exploration of paediatricians' approach to decision-making for children with life-limiting conditions: there is a spectrum of paediatricians’ roles and responsibilities in decision-making, and the specific influences on paediatricians’ choice of approach for end-of-life decisions. In relation to, analysis showed four distinct approaches: non-directed, joint, interpretative, and directed. In relation to, the common factors were: harm to the child, possible psychological harm to parents, parental preferences in decision-making, and resource allocation.ConclusionsDespite self-reporting shared decision-making practices, what paediatricians often described were physician-led decision-making approaches. Adopting these approaches was predominantly justified by paediatricians’ considerations of harm to the child and parents. Further research is needed to elucidate the issues identified in this study, particularly the communication within and parental responses to physician-led approaches. We also need to further study how parental needs are identified in family-led decision-making approaches. These nuances and complexities are needed for future practice guidance and training around paediatric decision-making.Trial registration: Not applicable. (shrink)

If people sometimes participate in research because of altruism—because they want to help in the search for treatments—should we revise our views about what kinds of experiments are ethical? If participants act out of altruism, we might let them accept greater risks than we would if they are motivated only by a desire for personal gain. But how can we know when participants are genuinely altruistic?

: "Clinical pragmatism" is an important new method of moral problem solving in clinical practice. This method draws on the pragmatic philosophy of John Dewey and recommends an experimental approach to solving moral problems in clinical practice. Although the method may shed some light on how clinicians and their patients ought to interact when moral problems are at hand, it nonetheless is deficient in a number of respects. Clinical pragmatism fails to explain adequately how moral problems can be solved experimentally, (...) it underestimates the relevance and importance of judgment in clinical ethics, and it presents a questionable account of the role that moral principles should play in moral problem solving. (shrink)