BackgroundThe expectation of pandemic-induced severe resource shortages has prompted authorities to draft and update frameworks to guide clinical decision-making and patient triage. While these documents differ in scope, they share a utilitarian focus on the maximization of benefit. This utilitarian view necessarily marginalizes certain groups, in particular individuals with increased medical needs.Main bodyHere, we posit that engagement with the disability critique demands that we broaden our understandings of justice and fairness in clinical decision-making and patient triage. We propose (...) the capabilities theory, which recognizes that justice requires a range of positive capabilities/freedoms conducive to the achievement of meaningful life goals, as a means to do so. Informed by a disability rights critique of the clinical response to the pandemic, we offer direction for the construction of future clinical triage protocols which will avoid ableist biases by incorporating a broader apprehension of what it means to be human.ConclusionThe clinical pandemic response, codified across triage protocols, should embrace a form of justice which incorporates a vision of pluralistic human capabilities and a valuing of positive freedoms. (shrink)

The relationship between evidence-based medicine (EBM) and clinical judgement is the subject of conceptual and practical dispute. For example, EBM and clinical guidelines are seen to increasingly dominate medical decision-making at the expense of other, human elements, and to threaten the art of medicine. Clinical wisdom always remains open to question. We want to know why particular beliefs are held, and the epistemological status of claims based in wisdom or experience. The paper critically appraises a number of (...) claims and distinctions, and attempts to clarify the connections between EBM, clinical experience and judgement, and the objective and evaluative categories of medicine. I conclude that to demystify clinical wisdom is not to devalue it. EBM ought not be conceived as needing to be limited or balanced by clinical wisdom, since if its language is translatable into terms comprehensible and applicable to individuals, it helps constitute clinical wisdom. Failure to appreciate this constitutive relation will help perpetuate medical paternalism and delay the adoption of properly evidence-based practice, which would be both unethical and unwise. (shrink)

In the biomedical and behavioral sciences, it is widely recognized that researchers conducting studies involving human participants must respect the autonomy of research subjects. There is significant debate in the clinical research ethics and bioethics literatures about what it means for an individual to be autonomous. According to proponents of the Liberal Conception of Autonomy, an autonomous person is an agent who has interests and opinions and the capacity to deliberate about them. In contrast, proponents of the Relational Conception (...) of Autonomy argue that because humans are social creatures, autonomy is a relational concept and ought to be recognized as such by medical professionals. In this article, I argue that the LCA/RCA debate is flawed, and that the notion of freedom as non-domination, rather than autonomy, ought to be adopted for biomedical research ethics policies regarding informed consent and research agenda-setting. I then argue that this view of freedom should also be adopted... (shrink)

In a clinic-wide approach to establish liberal policies, a closed psychiatric ward was planned to be opened. The leaders of the multi-professional team of this ward requested continuous ethics support during the first few months after the transition from their previously closed ward into an open one. During the process of accompanying the team through this ethically sensitive period of institutional change, several variations of ethics consultation were developed: the ‘context-adjusted’ clinical ethics support. Some ethics consultations focused on a (...) retrospective evaluation of a patient case, in other ethics consultations consolidation of a previous case discussion was worked out, and/or reflections on fundamental ethical issues were included. Based on our experiences and the feedback of the team, we consider this context-adjusted clinical ethics support as feasible and effective. (shrink)

Libertarian paternalism is a concept derived from cognitive psychology and behavioural science. It is behind policies that frame information in such a way as to encourage individuals to make choices which are in their best interests, while maintaining their freedom of choice. Clinicians may view their clinical consultations as far removed from the realms of cognitive psychology but on closer examination there are a number of striking similarities.

The Blueprint for Transparency at the FDA recommends that the FDA proactively release more clinical trial data. We show that the FDA possesses the legal authority to act on this recommendation, and describe several reasons that the agency should do so. In particular, the primary existing route for researchers to obtain access to this data, the Freedom of Information Act, has important limits, as our own recent experience shows.

In lieu of an abstract, here is a brief excerpt of the content:Clinical Bioethics at NIH:History and A New VisionJohn C. Fletcher (bio)On July 3, 1995, Dr. John I. Gallin, Director of the Magnuson Clinical Center of the National Institutes of Health (NIH), convened a one-day "Conference on the Future of Clinical Bioethics at the National Institutes of Health Intramural Program." Conferees included NIH officials and a panel of consultants from bioethics programs around the nation.1 The subject (...) was the future of NIH's intramural bioethics program and specifically a vision of a new multi-component program, presented by Dr. Gallin, the first speaker. Dr. Harold Varmus, Director of NIH, was there to assure his support for Dr. Gallin's vision. This author, honored to be second speaker, was invited to sketch a brief history of bioethics at NIH. The present article reviews some of this history and then reports on Dr. Gallin's proposal, points of consensus among speakers and conferees, and the search for a Chief of the Clinical Bioethics Program.History of Bioethics at NIHIt is often said that NIH is a well-kept secret as the nation's leading biomedical research facility. Also, few people know that NIH has a long history in bioethics. Some key events in that history are shown in Figure 1, beginning with two that occurred prior to the birth of bioethics. NIH made an early policy response to protect human subjects of research and to find acceptable limits for scientific freedom. The Clinical Center (CC), a 550-bed research hospital, opened in 1953. A subcommittee of the Medical Board, the Clinical Research Committee (CRC), was formed for prior group review of all studies with normal volunteers. The traditional practice was for researchers themselves to decide when studies would begin, which subjects to recruit, and whether informed consent would be sought. The CRC intervention bit into this tradition. In addition, patient studies that posed significant risks or departed widely from medical practice were reviewed by referral from the Clinical Directors of the various Institutes. Was this CRC an early institutional review [End Page 355] board (IRB)? As a guest researcher, I was permitted to observe the CRCs meetings between 1966 and 1969. It functioned much like an IRB but had no community or non-scientist members. Other IRB-like review groups undoubtedly existed prior to the CRC. Robert Levine (personal communication, September 7, 1995) recalls that Beth Israel Hospital in Boston had one in 1938. Historical research is clearly needed on the earliest forms of research review.Table 1. Bioethics at NIHEventYearClinical Research Committee1953Surgeon-General's PPO #1291966NIGMS funds Hastings Genetics Group1973OPRR's Mission1974NLM's grant to KennedyInstitute for Bibliography of Bioethics1974Recombinant DNA Advisory Committee1974STEP Series Bioethics Speakers1975Pre-IRBs at the CC1975-76Assistant for Bioethics to Director, CC1977RAC-Human Gene Therapy Subcommittee1983Lipsett Proposal (ICD)1983Liaison Group, CC1983Bioethics Program, CC1985Durable Power of Attorney for Researchwith Incapacitated Subjects1985-86NLM funds National Reference Centerfor Bioethics Literature1985National Institute for Nursing Research1986Bioethics Post-Doctoral Fellows Program1989ELSI Program1989Bioethicists on CC-IRBs1989CC-Ethics Committee1990Office of Human Subjects Research1992 [End Page 356]Between 1963 and 1967, the media exposed instances of ethically troubling research, and Beecher (1966) and Pappworth (1967) published sharp criticisms of the weak state of research ethics. In 1966, Surgeon-General William Stewart and NIH Director James Shannon issued a policy requiring local group review of all research involving human subjects before making an application for NIH peer review (Surgeon General 1966). The policy was the first in any nation to mandate ethics committees for clinical research. However, it did not apply to the NIH intramural program until Congress passed the National Research Act in 1974 (Public Law 93-348; 202, 88 Stat. 342, 1974). This lag permitted NIH intramural investigators the luxury of feeling above the norms imposed on ordinary mortals and guaranteed more resistance to the inevitable change to come. Resistance to change marked the intramural program from the mid-1960s to the mid-1970s... (shrink)

Emotions play an important part in moral life. Within clinical ethics support (CES), one should take into account the crucial role of emotions in moral cases in clinical practice. In this paper, we present an Aristotelian approach to emotions. We argue that CES can help participants deal with emotions by fostering a joint process of investigation of the role of emotions in a case. This investigation goes beyond empathy with and moral judgment of the emotions of the case (...) presenter. In a moral case deliberation, the participants are invited to place themselves in the position of the case presenter and to investigate their own emotions in the situation. It is about critically assessing the facts in the case that cause the emotion and the related (moral) thoughts that accompany the emotion. It is also about finding the right emotion in a given situation and finding the right balance in dealing with that emotion. These steps in the moral inquiry give rise to group learning. It is a process of becoming open towards the perspectives of others, leading to new insights into what is an appropriate emotion in the specific situation. We show how this approach works in moral case deliberation. A physician presents a situation in which he is faced with a pregnant woman who is about to deliver multiple extremely premature infants at the threshold of viability. The moral deliberation of the case and the emotions therein leads to the participants’ conclusion that “compassion” is a more adequate emotion than “sadness”. The emotion “sadness” is pointed towards the tragedy that is happening to the woman. The emotion “compassion” is pointed towards the woman; it combines consideration and professional responsibility. Through the shift towards compassion, participants experienced more creativity and freedom to deal with the sad situation and to support the woman. The paper ends with an analysis and reflection on the deliberation process. In the conclusion we argue for more attention to emotions in clinical ethics support and offer some directions for doing this in the right way. (shrink)

Now in its fourth edition, Rational Diagnosis and Treatment: Evidence-Based Clinical Decision - Making is a unique book to look at evidence-based medicine and the difficulty of applying evidence from group studies to individual patients._ The book analyses the successive stages of the decision process and deals with topics such as the examination of the patient,_the reliability of clinical data, the logic of diagnosis, the fallacies of uncontrolled therapeutic experience and the need for randomised clinical trials and (...) meta-analyses. It is the main theme of the book that, whenever possible, clinical decisions must be based on the evidence from clinical research, but the authors also explain the pitfalls of such research and the problems involved in applying evidence from groups of patients to the individual patient._ For this new edition, the sections on placebo and meta-analysis and on alternative medicine have been thoroughly updated, and there is more focus on insufficient reporting of harms of interventions. The sections on different research designs describe advantages and limitations, and the increased medicalisation and the effects of cancer screening on health people are noted. A section on academic freedom when clinicians collaborate with industry and ghost authors is added._ This essential reference work integrates the science and statistical approach of evidence-based medicine with the art and humanism of medical practice; distinguishing between data, sets of data, knowledge and wisdom, and their application. Such an intellectually challenging book is ideal for both medical students and doctors who require theoretical and practical clinical skills to help ensure that they apply theory in practice. (shrink)

Clinical Study Agreements can have profound effects both on the protection of human subjects and on the independence of investigators to conduct research with scientific integrity. Sponsors, institutions, and even investigators may fail to give adequate attention to these issues in the negotiation of CSAs. Despite the key role of CSAs in structuring ethically important aspects of research, they remain largely unregulated and unreviewed for adherence to ethical norms. Academic institutions routinely enter into research contracts that fail to meet (...) adequate ethical standards. This is a failing that can have serious consequences.Accordingly, it is necessary that some independent body have the authority both to review research contracts for compliance with norms of subject protection and ethical integrity, and to reject studies that fail to meet ethical standards. Such review should take place prior to the start of research, not later. Because of its expertise and authority, the institutional ethics review board is the appropriate body to undertake such review. Much recent commentary has focused on contractual restrictions on the investigator’s freedom to publish research findings. The Olivieri experience, and that of other investigators, has brought freedom of publication issues into sharp focus. Clinical study agreements also raise a number of other ethical issues relating to human subjects and research integrity, however, including disclosures relating to patient safety, data analysis and reporting, budget, confidentiality, and premature termination of the study. This paper describes the ethical issues at stake in structuring such agreements and suggests ethical standards to guide institutional ethics review. (shrink)

Hundreds of clinical trials of potential treatments and vaccines for the “coronavirus 19 disease” (COVID-19) have been set up in record time. This is a remarkable reaction to the global pandemic, but the absence of a global coordination of clinical research efforts raises serious ethical concerns. Some COVID-19 patients might carry the burden of clinical trial involvement even though their trial cannot be completed as researchers are competing for patients. A shortage of medicines can occur when existing (...) drugs are diverted for clinical trials. Research ethics committees are overburdened with multiple applications. A multitude of trials can also overstretch medical staff and risk neglecting non-COVID-19 patients. And finally, conflicting conclusions from a multitude of heterogeneous trials might lead to delays in public health decisions about life-saving issues. These challenges are made worse by the unpredictable evolution of epidemics, the active involvement of political decision-makers in scientific issues and the pressure of social media globally. While freedom to conduct research must be safeguarded, global health emergency situations would greatly benefit from effective international coordination mechanisms for clinical research. (shrink)

This paper analyses the way in which being in possession of an adequate range of options is an essential component of autonomy. I discuss the way in which the conceptualisation of options in terms of basic rights might assist this argument, and apply these ideas to HIV/AIDS clinical research in the developing world. Finally, I suggest that mechanisms should be put in place through which vulnerable research participants can express their views about the relationship between the research in which (...) they are involved, and needs of a worthwhile life. (shrink)

This is a reflective essay written about the humanism evident in a cross-cultural patient–doctor encounter in an HIV clinic in Swaziland, Africa.

Jessica Flanigan defends patients' rights of self-medication on the grounds that same moral reasons against medical paternalism in clinical contexts are also reasons against paternalistic pharmaceutical policies, including prohibitive approval processes and prescription requirements.

In January 2018, the Trump administration established the Conscience and Religious Freedom Division within the Department of Health and Human Services’ Office of Civil Rights with the explicit goal of intensifying legal protection of religious and conscience objections in health care. The establishment of OCR’s new division illustrates the significant powers of administrative agencies to mold the substance of law without seeking legislative action. The mere formation of a division dedicated to protecting conscience rights is already having a significant (...) impact; it is causing health care entities, including hospitals, research organizations, and clinics, to change policies and practices to comply with the declared enforcement strategy. Administrative agencies also shape the law in what they decide not to pursue. For example, OCR has suspended enforcement of the Affordable Care Act prohibition against gender‐identity discrimination. (shrink)

Decentralized clinical trials (DCTs) have the potential to advance the conduct of clinical trials, but raise several ethical issues, including obtaining valid informed consent. The debate on the ethical issues resulting from digitalization is predominantly focused on direct risks relating to for example data protection, safety, and data quality. We submit however, that a broader view on ethical aspects of DCTs is needed to touch upon the new challenges that come with the DCT practice. Digitalization has impacts that (...) go beyond its direct purposes, by shaping behaviors, experiences, social relations, and values. We examine four elements of the informed consent procedure that are affected by DCTs, while taking these soft impacts of technologies into account: (i) informing participants and testing understanding, (ii) freedoms in relation to responsibilities and burdens, (iii) trust in participant-researcher relations, and (iv) impacts on the concept of privacy. Our analysis reveals that a broad view is key for optimal conduct of DCTs. In addition, it provides insight into the ethical impacts of DCTs on informed consent. Technologies such as DCTs potentially have profound impacts which are not immediately addressed by the existing regulatory frameworks, but nonetheless important to recognize. These findings can guide future practices of DCTs to foster the important values of clinical research in this novel approach for conducting clinical trials. (shrink)

Ethical considerations from both the clinical and public health perspectives have been used to examine whether it is ethically permissible to mandate the seasonal influenza vaccine for healthcare workers (HCWs). Both frameworks have resulted in arguments for and against the requirement. Neither perspective resolves the question fully. By adding components of justice to the argument, I seek to provide a more fulsome ethical defence for requiring seasonal influenza immunisation for HCWs. Two critical components of a just society support requiring (...) vaccination: fairness of opportunity and the obligation to follow democratically formulated rules. The fairness of opportunity is informed by Rawls’ two principles of justice. The obligation to follow democratically formulated rules allows us to focus simultaneously on freedom, plurality and solidarity. Justice requires equitable participation in and benefit from cooperative schemes to gain or profit socially as individuals and as a community. And to be just, HCW immunisation exemptions should be limited to medical contraindications only. In addition to the HCWs fiduciary duty to do what is best for the patient and the public health duty to protect the community with effective and minimally intrusive interventions, HCWs are members of a just society in which all members have an obligation to participate equitably in order to partake in the benefits of membership. (shrink)

"Whole brain death" (neurological death) is well-established as a legal standard of death across the country. Recently, New Jersey became the first state to enact a statute recognizing a personal religious exemption (a conscience clause) protecting the rights of those who object to neurological death. The Act also mandates adoption through the regulatory process of uniform and up-to-date clinical criteria for determining neurological death.

The question whether human beings have free will has been debated by philosophers and theologians for thousands of years. More recently, neuroscientists have applied novel concepts and tools in neuroscience to address this question. We submit that human beings do have free will and the physiological substrate for its exercise is contained within neural networks. We discuss the potential neurobiology of free will by exploring volitionally initiated motor activity and the behavioural-response to a stimulus-response paradigm. We also submit that the (...) exercise of free will can be affected in patients with the certain neurological disorders such as the behavioural variant of frontotemporal dementia. Clinicopathological correlation in patients with this disorder provides an opportunity to further elucidate the neural substrate for this fundamental human attribute. We also discuss the clinical correlates of the loss of free will in this population, which is a source of significant distress to patients, significant others and care givers. (shrink)

Continuing medico-technical progress has led toan increasing medicalisation of pregnancy andchildbirth. One of the most common technologiesin this context is ultrasound. Based on someidentified `pro-technology feminist theories',notably the postmodernist feminist discourse,the technology of ultrasound is analysedfocusing mainly on social and political ratherthan clinical issues. As empirical researchsuggests, ultrasound is welcomed by themajority of women. The analysis, however, showsthat attitudes and decisions of women areinfluenced by broader social aspects. Furthermore, it demonstrates how the visualtechnology of ultrasound, in addition to otherreproductive (...) technology in maternity care, islinked to the `personification' of the foetusand has therefore contributed to a new image ofthe foetus. The exploration of these issueschallenges some arguments of feministdiscourse. It draws attention to possibleadverse implications of the technology forwomen's reproductive freedom and indicates theimportance of the topic for politicaldiscussions. (shrink)

The COVID-19 virus is severely testing the Italian healthcare system, as the requests for intensive treatment are greater than the real capacity of the system to receive patients. Given this emergency situation, it follows that citizens are limited in their freedom of movement in order to limit infection, and that in hospitals a significant number of critical situations must be faced. This brief contribution aims to offer a reflection on the public and clinical role of the bioethicist: a (...) figure able to promote dialogue between the world of medicine and the community, and to face ethical dilemmas even in emergent clinical settings. (shrink)

The current situation in medicine has been described as a crisis of credibility, as the profit motive of industry has taken control of clinical trials and the dissemination of data. Pharmaceutical companies maintain a stranglehold over the content of medical journals in three ways: (1) by ghostwriting articles that bias the results of clinical trials, (2) by the sheer economic power they exert on journals due to the purchase of drug advertisements and journal reprints, and (3) by the (...) threat of legal action against those researchers who seek to correct the misrepresentation of study results. This paper argues that Karl Popper's critical rationalism provides a corrective to the failure of academic freedom in biomedical research. (shrink)

Psychoanalysis has traditionally had difficulty in accounting for the existence of evil. Freud saw it as a direct expression of unconscious forces, whereas more recent theorists have examined the links between early traumatic experiences and later ‘evil’ behaviour. _Humanizing Evil: Psychoanalytic, Philosophical and Clinical Perspectives _explores the controversies surrounding definitions of evil, and examines its various forms, from the destructive forces contained within the normal mind to the most horrific expressions observed in contemporary life. Ronald Naso and _Jon Mills_ (...) bring together an international group of experts to explore how more subtle factors can play a part, such as conformity pressures, or the morally destabilizing effects of anonymity, and show how analysts can understand and work with such factors in clinical practice._ _Each chapter is unified by the view that evil is intrinsically linked to human freedom, regardless of the gap experienced by perpetrators between their intentions and consequences. While some forms of evil follow seamlessly from psychopathology, others call this relationship into question. Rape, murder, serial killing, and psychopathy show very clear links to psychopathology and character whereas the horrors of war, religious fundamentalism, and political extremism resist such reductionism. Humanizing _Evil_ is unique in the diversity of perspectives it brings to bear on the problem of evil. It will be essential reading for psychoanalysts, psychotherapists, philosophers, and Jungians. Because it is an integrative depth-psychological effort, it will interest general readers as well as scholars from a variety of disciplines including the humanities, philosophy, religion, mental health, criminal justice, political science, sociology, and interdisciplinary studies. Ronald Naso, Ph.D., ABPP is psychoanalyst and clinical psychologist in independent practice in Stamford, CT. The author of numerous papers on psychoanalytic topics, he is an associate editor of _Contemporary Psychoanalytic Studies_, and contributing editor of _Division/Review _and _Journal of Psychology and Clinical Psychiatry_. His book, _Hypocrisy Unmasked: Dissociation, Shame, and the Ethics of Inauthenticity_, was published by Aronson in 2010. Jon Mills, Psy.D., Ph.D., ABPP is a philosopher, psychoanalyst, and clinical psychologist. He is Professor of Psychology & Psychoanalysis at Adler Graduate Professional School, Toronto. A 2006, 2011, and 2013 Gradiva Award winner, he is Editor of two book series in psychoanalysis, on the Editorial Board for _Psychoanalytic Psychology_, and is the author and/or editor of thirteen books including his most recent works, _Underworlds: Philosophies of the Unconscious from Psychoanalysis to Metaphysics_, and _Conundrums: A Critique of Contemporary Psychoanalysis_, which won the Goethe Award for best book in 2013. (shrink)

What is the best way to understand the narratives of self-identity at the beginning of the 21st century? This interdisciplinary collection brings together perspectives from analytical psychology, sociology, psychiatry, psychosocial studies and psychoanalysis to consider questions about individuation and freedom in our disconnected world. The contributors discuss the meaning of, and need for, individuation in individualized and liquid societies. The book begins with a comparison of three approaches: C.G. Jung's individuation, Ulrich Beck's individualization, and Zygmunt Bauman's liquidity. This sets (...) the tone for further consideration of topics including guilt, social media, global nomads, and surveillance. Theoretical reflections are enhanced by clinical material, and the book emphasises the connections between sociology and psychoanalysis, offering significant insights into the importance of psychosocial approaches. This timely work will be of great interest to academics and scholars of psychosocial studies, Jungian studies, sociology and politics. (shrink)

Health ethics can justify the use of vaccination mandates. However, policies that pressurize parents to vaccinate their children can undermine traditional clinical ethics standards (e.g. autonomy and informed consent). The aim of this paper is to argue that the ethical impact of vaccination mandates can only be determined in the context of the clinical encounter. Public debate on the topic tends to be general in nature and, as a result, issues that require clarification to help sustain the trust (...) of service users are underexamined. In addition, ethical debates are hampered by a toxic dichotomy in the public sphere between those (anti-vaccinators) who claim a move away from parental choice is necessarily a serious ethical violation; and others (often health scientists) who neglect serious consideration of ethical issues. This predicament permits flawed ethical claims to be made, and to remain unchallenged. Despite this, ethical concerns – including those relating to trust and individual freedom – are fundamental to sustaining confidence in vaccination. This has recently been highlighted by the Covid-19 pandemic which made accessing childhood vaccinations harder, leading to a further decline in uptake. The pandemic has also revealed the strength of public feeling towards infection control measures that restrict peoples’ freedoms. In this paper I argue that to minimize the ethical disruption associated with the use of vaccination mandates, it is essential to focus more attention on their impact in the clinic and to accurately identify the drivers of such tensions. (shrink)

Research question The secondary use of clinical data for research and learning activities has the potential to significantly improve medical knowledge and clinical care. To realize this potential, an ethical and legal basis for data use is needed, preferably in the form of patient consent. This raises the question: Do patients have a moral duty to provide their clinical data for research and learning activities? Methods On the basis of an ethical approach that we call “caring liberalism,” (...) we evaluate plausibility and moral weight of the following arguments in favor of a duty on patients to provide their clinical data for research and learning activities: the general duty to help; solidarity; the duty to act in the public interest; the free-rider argument; transgenerational justice; the principle of giving back; the do-not-harm principle; freedom of research and the value of science. Results The general duty to help and the duty to act in the public interest are strong reasons for a moral duty of patients to provide their clinical data for research and learning activities. Transgenerational justice and the principle of giving back are ethically weak reasons for such a duty but might be motivational factors. The other reasons are not appropriate to justify a duty. The results are relevant in several respects: for patients who are asked to consent to the secondary use of their clinical data; for the ethical discussion of the question whether and to what extent deviations from the classical specific consent are ethically justifiable under certain conditions; for the legal discussion of the conditions for a proportionate secondary use of clinical data for research and learning activities. (shrink)

The views of parents and staff about physical and symbolic space and its effects on ethical clinical practice are reported. Researchers observed four neonatal intensive care units (NICUs) in southern England, and interviewed 40 senior staff and the parents of 80 babies. The adults' concerns include: how space affects the sharing of information and responsibility for the babies; respect and welcoming policies; access, freedom of movement and accessibility of staff; family friendly space and privacy; aesthetic values; and 'baby-led' (...) space. The paper concludes that abstract principles of respect for autonomy and attitudes towards the baby's biological and personal space take on practical embodied meanings in clinical spaces and practices. NICU design and aesthetics convey powerful ethical messages of welcome or exclusion that endorse or undermine partnerships between staff and parents. Helping premature and impaired babies to reach their space at the centre of their family involves sensitive management. (shrink)

Medicine is a scientific discipline, but it is sometimes difficult to separate what is scientific and what is a clinical, practical activity. Man is the object, but he is always the subject of medical research and therefore these two elements become closely bound together by a thread of moral interdependencies. Every mentor of a young academic and all institutions dealing with the teaching of and research into medicine must understand multidimensional, multifaceted, and multilevel aspects of their activity and give (...) them due regard in the educational process. The educational mission of an academic institution and of the teacher working there may be summed up in one phrase: Teach thinking! At the same time, the task of a school and the individual mentor is to teach the student to distinguish personal freedom from a lack of the feeling of responsibility. The medieval principle “Universitas magistrorum et scholarium”, and thus the corporation, the community of teachers and students, has not lost any of its relevance and value today. The situation is, in its far-reaching consequences, tragic in which the “insufficiently tutored teach”. Both physician and teacher, and especially physician-teacher, are not only professions, but also callings. (shrink)

This book offers a philosophical perspective on contemporary Tourette Syndrome scholarship, a field which has exploded over the last thirty years. Despite intense research efforts on this common neurodevelopmental condition in the age of the brain sciences, the syndrome’s causes and potential cures remain intriguingly elusive. How does this lack of progress relate to the tacitly operating philosophical concepts that shape our current thinking about Tourette Syndrome? This book foregrounds these tacit concepts and shows how they relate to “big topics” (...) in philosophy such as time, volition, and the self. By tracing how these topics relate to current research on Tourette’s, it invites us to re-think our approach to research and care. Such re-thinking is urgently needed: individuals and families living with Tourette Syndrome remain under-serviced as pharmacological and behavioural therapies provide relief for some but not all who need support. This book highlights what questions we ask and do not ask in contemporary scholarship, thereby surfacing invisible constraints and opportunities in the field. It is of interest to scholars, health professionals, students, and affected families who want to better understand this burgeoning field of research with its conceptual controversies, approaches to aetiology, and directions for new research and improved clinical care. (shrink)

Excluding women from participating in clinical drug trials might seem like a good thing. It may seem like a good way to protect women from the risks of being a research subject and a way to prevent fetal harm. However, the exclusion or inadequate representation of women in clinical trials may actually cause harm. Excluding women from clinical trials does not rule out the possibility of damage to offspring. Nor does it guarantee researchers or institutions freedom (...) from legal liability. The issue of women’s exclusion has received substantial attention in the USA but very little in Australia. (shrink)

Physicians expressing opinions on medical matters that run contrary to the consensus of experts pose a challenge to licensing bodies and regulatory authorities. While the right to express contrarian views feeds a robust marketplace of ideas that is essential for scientific progress, physicians advocating ineffective or dangerous cures, or actively opposing public health measures, pose a grave threat to societal welfare. Increasingly, a distinction has been made between professional speech that occurs during the physician-patient encounter and public speech that transpires (...) beyond the clinical setting, with physicians being afforded wide latitude to voice empirically false claims outside the context of patient care. This paper argues that such a bifurcated model does not sufficiently address the challenges of an age when mass communications and social media allow dissenting physicians to offer misleading medical advice to the general public on a mass scale. Instead, a three-tiered model that distinguishes between citizen speech, physician speech and clinical speech would best serve authorities when regulating physician expression. (shrink)

Ethical concerns have been raised about routine practice in paediatric gender clinics. We discuss informed consent and the risk of iatrogenesis in the prescribing of gonadotropin-releasing hormone...

Epilepsy surgery is the most effective therapeutic approach for children with drug resistant epilepsy. Recent advances in neurosurgery, such as the Laser Interstitial Thermal Therapy, improved the safety and non-invasiveness of this method. Electric and magnetic source imaging plays critical role in the delineation of the epileptogenic focus during the presurgical evaluation of children with DRE. Yet, they are currently underutilized even in tertiary epilepsy centers. Here, we present a case of an adolescent who suffered from DRE for 16 years (...) and underwent surgery at Cook Children's Medical Center. The patient was previously evaluated in a level 4 epilepsy center and treated with multiple antiseizure medications for several years. Presurgical evaluation at CCMC included long-term video electroencephalography, magnetoencephalography with simultaneous conventional EEG and high-density EEG in two consecutive sessions, MRI, and fluorodeoxyglucose - positron emission tomography. Video long-term EEG captured nine focal-onset clinical seizures with a maximal evolution over the right frontal/frontal midline areas. MRI was initially interpreted as non-lesional. FDG-PET revealed a small region of hypometabolism at the anterior right superior temporal gyrus. ESI and MSI performed with dipole clustering showed a tight cluster of dipoles in the right anterior insula. The patient underwent intracranial EEG which indicated the right anterior insular as seizure onset zone. Eventually LITT rendered the patient seizure free. Retrospective analysis of ESI and MSI clustered dipoles found a mean distance of dipoles from the ablated volume ranging from 10 to 25 mm. Our findings highlight the importance of recent technological advances in the presurgical evaluation and surgical treatment of children with DRE, and the underutilization of epilepsy surgery in children with DRE. (shrink)

Reproductive genetic carrier screening is increasingly being offered more widely, including to people with no family history or otherwise elevated chance of having a baby with a genetic condition. There are valid reasons to reject a prevention-focused public health ethics approach to such screening programs. Rejecting the prevention paradigm in this context has led to an emphasis on more individually-focused values of freedom of choice and fostering reproductive autonomy in RCS. We argue, however, that population-wide RCS has sufficient features (...) in common with other public health screening programs that it becomes important also to attend to its public health implications. Not doing so constitutes a failure to address the social conditions that significantly affect people’s capacity to exercise their reproductive autonomy. We discuss how a public health ethics approach to RCS is broader in focus than prevention. We also show that additional values inherent to ethical public health—such as equity and solidarity—are essential to underpin and inform the aims and implementation of reproductive carrier screening programs. (shrink)

How one reacts to lying depends on individual temperament, intellectual training and value commitments, freedom status,, consideration of consequences, emotional resilience an...

A 16 year old Hodgkin lymphoma patient refuses to have his blood specimen drawn, thus canceling his scheduled oncologic treatment. As a 16 year old, he has no legal standing as an adult. His parents are split over his decision. One supports his right to choose; the other wishes the specimen to be drawn and the chemotherapy reinstated. The physicians at the hospital are seeking legal redress to have the court order the blood specimens to be taken.

Contemporary issues such as euthanasia, surrogate motherhood, organ transplantation and gene therapy, which occupy the minds of ethicists in the industrialized countries are, for the moment, irrelevant in most developing countries. There, the ethics of scarcity, sacrifice, cross-cultural research, as well as the activities of multinational companies, are germane. In this article, only the ethics of scarcity and sacrifice will be discussed. Structural adjustment programmes, designed to solve the economic problems of the developing countries, muddied the waters. The dilemma confronting (...) practitioners in developing countries is how to adhere to the basic principles of medical ethics in an atmosphere of hunger, poverty, war and ever-shrinking and often non-existent resources. Nowhere else in the world is the true meaning of scarcity portrayed as vividly as in the developing countries. Consequently, the doctor's clinical freedom may have to be sacrificed by the introduction of an essential drugs list and practice guidelines. The principle of greater good, while appealing, must be carefully interpreted and applied in the developing countries. Thus, while health promotion and disease prevention must be the primary focus, health planners should avoid pushing prevention at the expense of those currently sick. Health care reform in developing countries must not merely re-echo what is being done in the industrialized countries, but must respond to societal needs and be relevant to the community in question. (shrink)

A clinical scenario is described where an anaesthetist is concerned about the seemingly high risk/benefit ratio relating to laparoscopic versus standard inguinal hernia operations. Some options for further action by the anaesthetist are introduced. The remainder of the paper explores the question of who can legitimately assess the acceptability of risk/benefit ratios, and defends the use of practice guidelines at the expense of so called clinical freedom. It is argued that respect for persons is not breached by (...) limiting the treatment options offered to patients to those therapies which have a ‘reasonable’ risk/benefit ratio. This ‘reasonableness’ is context dependent, and should be properly decided by those with expertise in the field. (shrink)

The Belgian health care system has a few features that may havecontributed to the rising costs of health care: patients' freechoice of physicians, large clinical freedom of physicians, essentiallya fee-for-service remuneration for medical specialists in which the feesare agreed between insurance funds and physicians. The increased medicalconsumption and costs have prompted the state and insurance companies totake measures that limit the professional autonomy of the physicians.Access to medical education, free until 1997, is now restricted. Themedical profession is organized (...) in the Order of Physicians that hasestablished a code of professional ethics that has moral but not legalforce. So far, there is no special legislation for thepatient–physician relationship, though laws on specific issueslike organ transplantation contain duties for physicians. In recentyears a debate is taking place on patients' rights, of which informedconsent is central and gaining importance in medico-legal publications.An analysis of (ethical and legal) regulations concerning thewithholding or withdrawal of treatment by physicians demonstrate thatthe profession still enjoys a large clinical autonomy, though duediscussion with the patient has become more explicitly required. Therespect for professional autonomy is not primarily due to any formalpower that the Order of Physicians would have, but is rather grounded inthe generally high quality of the patient–physician relationshipthat in ethical terms is considered essentially as a confidencerelationship rather than a contractual relationship. (shrink)

In response to rapidly rising health care costs in the United States, federal and state governments and private industry are instituting numerous and diverse cost-containment plans. As devices for coping with a scarcity of resources, such plans present serious challenges to physicians' traditional single-minded devotion to patient welfare. Those which contain costs by directly limiting medical options or by controlling physicians' daily clinical decisions can threaten the quality of medical care by allowing economic authorities to make essentially medical judgments. (...) In contrast, other plans coax compliance by arranging incentives, e.g., offering financial rewards for successful cost containment. While they allow for clinical freedom, these plans create conflicts between physicians' fiduciary obligations to their patients and the competing interests of the payers. Such conflicts arise as physicians try to work within governmental or corporate cost containment policies, and also as they attempt to streamline clinical efficiency. Throughout, issues of justice emerge as physicians seek to reconcile their own patients' claims upon limited common resources with others' equally legitimate claims. (shrink)

A clinical scenario is described where an anaesthetist is concerned about the seemingly high risk/benefit ratio relating to laparoscopic versus standard inguinal hernia operations. Some options for further action by the anaesthetist are introduced. The remainder of the paper explores the question of who can legitimately assess the acceptability of risk/benefit ratios, and defends the use of practice guidelines at the expense of so called clinical freedom. It is argued that respect for persons is not breached by (...) limiting the treatment options offered to patients to those therapies which have a ‘reasonable’ risk/benefit ratio. This ‘reasonableness’ is context dependent, and should be properly decided by those with expertise in the field. (shrink)

This essay considers Richard Zaners storytelling in Troubled Voices as a form of possibilizing which uses the stories to exemplify important moral themes such as contingency and freedom. Distinguishing between activities of moral discovery through the telling of a story and posing in the sense of writing to tell the moral of the story, I suggest that something crucial goes on for Zaner in his own tellings. Several of the more insistent implications Zaner reveals about the moral relationships encountered (...) in the activity of clinical ethics consultation are examined in that light, especially regarding this question: is it more beneficial, or harmful, to articulate elements of core meanings and values that are entailed in individual viewpoints, which, prior to an ethics consultants participation, may have remained unspoken and possibly unacknowledged? (shrink)

This essay argues for two conclusions. First, clinical decision-making is not best thought of as analogous to the purchase of other services, such as car repair. Health-care decision-making is far more difficult, collaborative, emotionally fraught, and subject to cognitive distortions. Second, the provision of health care should not be delegated to unregulated markets. Unlike other markets, there is no reason to expect health-care market outcomes to be efficient or fair or to promote individual freedom, properly conceived. Markets may (...) play an important role in implementing an allocation of healthcare, but they are not an ethically acceptable alternative to determining what that allocation should be. (shrink)

Nuestro trabajo intenta presentar, en su primera parte, la práctica de la filosofía clínica a partir de su pertinencia dentro de la filosofía antigua (clásica) en tanto ejercicio espiritual de transformación de sí. Con ello se quiere referir con el concepto de espíritu en comprender un ejercicio no como producto sólo del pensamiento sino a una totalidad psíquica y emocional del individuo, en sentirse dentro de la perspectiva del todo. Era un arte de vivir, un modo de vida que intenta (...) comprender más profundamente la totalidad de la existencia. La filosofía no es una disciplina que perseguía plantarse ante la dimensión única del conocimiento teórico sino en el marco del yo y del ser: consiste en un itinerario, un proceso, un viaje para la ampliación de la conciencia, que busca aumentar la captación, la atención, la vivencia y expansión del ser. En su segunda parte nos adentramos a examinar la figura del tirano en y como conciencia política degradada. Para ello nos centramos en el proceso de la personalidad de la condición de lo tiránico y del tirano dentro de la vida política, pero también como éste se nos presenta como germen en nosotros mismos y de cómo se establece a partir de ello –junto a las condiciones sociales requeridas-, su existencia proyectada en un individuo particular. La filosofía clínica es una filosofía crítica en la medida que tiene por asunto el pensamiento en sí mismo; es una filosofía con conciencia de sí misma; coloca al pensamiento en una sala de observación y cuidados intensivos ¿Se trata de comprender la política como un ejercicio espiritual? Por supuesto, un ejercicio cotidiano a lo largo de nuestra existencia, donde pueda permitirnos desarrollar una atención,una inteligencia, un crecimiento y una transformación de nuestra individualidad social autónoma como ciudadano de una región y del mundo, pero comprometida con su comunidad de vida. De un modo de aprender el dominio de uno mismo, del cumplimiento de los deberes, de la libertad pública y privada, que nos lleva a renunciar de todo aquello que no dependa de nosotros y ocuparnos de lo que sí depende; mantener una rectitud de acción en conformidad con el grado de evolución de nuestra razón. On the tyranny in Plato Our work attempts to present, in its first part, the practice of clinical philosophy from its relevance as a spiritual exercise of self-transformation within ancient (classical) philosophy. The¡ concept of spirit is meant to bring about an understanding of this exercise not as a sole product¡ of thinking, but as the involvement of the individual’s psychic and emotional totality, which entails that the individual should feel as a part of the whole. It was an art of living, a way of life that attempts to understand more deeply the totality of existence. Philosophy is not a discipline that sought to face the sole dimension of theoretical knowledge. Rather, it is built around the framework of self and being. It consists of a route, a process, a journey to broaden consciousness. It seeks to increase uptake, attention, experience and expansion of being. In the second part we examine in depth the figure of the tyrant as degraded political consciousness. To this aim we focus on the process of the personality of the tyrannical and the tyrant within political life, but also on how the latter is a seed within ourselves, and on how, on this basis,his existence projected onto a particular individual becomes established –together with the required social conditions. Clinical philosophy is a critical philosophy inasmuch as its subject-matteris thought in itself; it is a philosophy with self-awareness; it places thought in an observation and intensive care room. Are we to understand politics as a spiritual exercise? Of course, an everyday exercise throughout our existence, which enables us to develop a degree of attention, intelligence, growth and transformation of our social autonomous individuality as citizens of a region and the world, while sill committed to our life community. It enables us to learn self-control, to carry out our duties, to exercise public and private freedom, in a way that makes us give up everything which doesnot depend upon us and pay attention to what actually does. It enables us to maintain rectitude of action, in agreement with our reason’s degree of evolution. (shrink)