Bowman-Smart et al. (2023) argue for a framework to examine the ethical issues associated with genetic screening for non-medical traits in the context of noninvasive prenatal testing (NIPT). Such s...

Background: Medical education literature suggests that ethics education should be learner-centered and problem-based rather than theory-based. Team-based learning is an appropriate method for this suggestion. However, its effectiveness was not investigated enough in medical ethics education. Research question: Is team-based learning effective in medical ethics education in terms of knowledge retention, in-class learner engagement, and learner reactions? Research design: This was a prospective controlled follow-up study. We changed lecture with team-based learning method (...) to teach four topics in a 2-week medical ethics clerkship, while the remaining topics were taught by lectures. For comparison, we formed team-based learning and lecture groups, in which the students and instructor are the same, but the topics and teaching methodologies are different. We determined in-class learner engagement by direct observation and student satisfaction by feedback forms. Student success for team-based learning and lecture topics in the end-of-clerkship exam and two retention tests performed 1 year and 2 years later were compared. Ethical considerations: Ethical approval for the study was granted by Akdeniz University Board of Ethics on Noninvasive Clinical Human Studies Ethics committee. Findings: Short-term knowledge retention did not differ; however, team-based learning was found superior to lecture at long-term retention tests. Student satisfaction was high with team-based learning and in-class engagement was better in team-based learning sessions. Discussion: Our results on learner engagement and satisfaction with team-based learning were similar to those of previous reports. However, knowledge retention results in our study were contrary to literature. The reason might be the fact that students prepared for the end-of-clerkship pass/fail exam (short term) regardless of the teaching method. But, at long-term retention tests, they did not prepare for the exam and answered the questions just using the knowledge retained in their memories. Conclusion: Our findings suggest that team-based learning is a better alternative to lecture to teach ethics in medical education. (shrink)

The Concussion in Sport Group guidelines have successfully brought the attention of brain injuries to the global medical and sport research communities, and has significantly impacted brain injury-related practices and rules of international sport. Despite being the global repository of state-of-the-art science, diagnostic tools and guides to clinical practice, the ensuing consensus statements remain the object of ethical and sociocultural criticism. The purpose of this paper is to bring to bear a broad range of multidisciplinary challenges to the (...) processes and products of sport-related concussion movement. We identify lacunae in scientific research and clinical guidance in relation to age, disability, gender and race. We also identify, through multidisciplinary and interdisciplinary analysis, a range of ethical problems resulting from conflicts of interest, processes of attributing expertise in sport-related concussion, unjustifiably narrow methodological control and insufficient athlete engagement in research and policy development. We argue that the sport and exercise medicine community need to augment the existing research and practice foci to understand these problems more holistically and, in turn, provide guidance and recommendations that help sport clinicians better care for brain-injured athletes. (shrink)

Background: After over 4 years since medical assistance in dying legalization in Canada, there is still much uncertainty about how this ruling has affected Canadian society. Objective: To describe the positive aspects of medical assistance in dying legalization from the perspectives of hospice palliative care providers engaging in medical assistance in dying. Design: In this qualitative descriptive study, we conducted an inductive thematic analysis of semi-structured interviews with hospice palliative care providers. Participants and setting: Multi-disciplinary hospice palliative (...) care providers in acute, community, residential, and hospice care in Vancouver and Toronto, Canada, who have engaged in end-of-life care planning with patients who have inquired about and/or requested medical assistance in dying. Ethical considerations: The research proposal was approved by University of British Columbia Research Ethics Board in Vancouver and University Health Network in Toronto. Participants were informed regarding the research goals, signed a written consent, and were assigned pseudonyms. Results: The 48 participants included hospice palliative care physicians (n = 22), nurses (n = 15), social workers (n = 7), and allied health providers (n = 4). The average interview length was 50 min. Positive aspects of medical assistance in dying legalization were identified at (1) the individual level: (a) a new end-of-life option, (b) patients’ last chance to express control over their lives, (c) patient and family comfort and relief, and (d) a unique learning experience for hospice palliative care providers; (2) the team level: (a) supportive collegial relationships, (b) broadened discussions about end-of-life and palliative care, and (c) team debriefs provide opportunities for education and support; and (3) the institutional level: (a) improved processes to facilitate the implementation logistics. Conclusion: While being involved in the medical assistance in dying process is complex and challenging, this study sheds light on the positive aspects of medical assistance in dying legalization from the hospice palliative care provider’s perspectives. Medical Assistance in Dying legalization has resulted in improved end-of-life conversations between hospice palliative care providers, patients, and their families. Improved communication leads to a better understanding of patients’ end-of-life care plans and bridges some of the existing gaps between hospice palliative care and medical assistance in dying. (shrink)

In recent years, to protect the rights and welfare of human subjects, institutions in the USA have begun to set up programmes to monitor ongoing medical research. These programmes provide routine, onsite oversight, and thus go beyond existing oversight such as investigating suspected misconduct or reviewing paperwork provided by investigators. However, because of a lack of guidelines and evidence, institutions have had little guidance in setting up their programmes. To help institutions make the right choices, we used (...) interviews and document analysis to study how and why 11 US institutions have set up their monitoring programmes. Although these programmes varied considerably, we were able to distinguish two general types. ‘Compliance’ programmes on the one hand were part of the institutional review board office and set up to ensure compliance with regulations. Investigators’ participation was mandatory. Monitors focused on documentation. Investigators could be disciplined, and could be obliged to take corrective actions. ‘Quality-improvement’ programmes on the other hand were part of a separate office. Investigators requested to be monitored. Monitors focused more on actual research conduct. Investigators and other parties received feedback on how to improve the research process. Although both types of programmes have their drawbacks and advantages, we argue that if institutions want to set up monitoring programmes, quality improvement is the better choice: it can help foster an atmosphere of trust between investigators and the institutional review board, and can help raise the standards for the protection of human subjects. (shrink)

BackgroundLiterature on issues relating to comprehension during the process of obtaining informed consent (IC) has largely focused on the challenges potential participants can face in understanding the IC documents, and the strategies used to enhance comprehension of those documents. In this review, we set out to describe the factors that have an impact on comprehension and the strategies used to enhance the IC process in sub-Saharan African countries.MethodsFrom November 2021 to January 2022, we conducted a literature search using a PRISMA (...) tool. We searched electronic databases (PubMed, EMBASE, EBSCOHOST) to identify relevant peer reviewed studies. We then reviewed the references of these articles to find additional literature that might have been missed through the initial search. We were particularly interested in full text articles in English that focused on the IC process in SSA published between 2006 and 2020. We included systematic reviews, and studies from Western and Asian countries that included data about SSA. We excluded articles that focused on medical interventions and studies that did not require IC.ResultsOut of the 50 studies included most were multi-country (n = 13) followed by single country studies in South Africa (n = 12); Kenya, Tanzania, Uganda (n = 5) each; Gambia, Ghana and Nigeria (n = 2)each ; and one each for Botswana, Malawi, Mali, Mozambique. We identified three areas of focus: (1) socio-cultural factors affecting IC; (2) gaps in the ethical and legal frameworks guiding the IC process; and (3) strategies used to improve participants’ understanding of IC.ConclusionOur review showed wide recognition that the process of achieving IC in SSA is inherently challenging, and there are limitations in the strategies aimed at improving comprehension in IC. We suggest that there is a need for greater flexibility and negotiation with communities to ensure that the approach to IC is suited to the diverse socio-cultural contexts. We propose moving beyond the literal translations and technical language to understanding IC comprehension from the participants’ perspectives and the researchers’ views, while examining contextual factors that impact the IC process. (shrink)

BackgroundBurnout is being experienced by medical students, residents, and practicing physicians at significant rates. Higher levels of Hardiness and Emotional Intelligence may protect individuals against burnout symptoms. Previous studies have shown both Hardiness and Emotional IntelIigence protect against detrimental effects of stress and can be adapted through training; however, there is limited research on how training programs affect both simultaneously. Therefore, the objective of this study was to define the association of Hardiness and Emotional Intelligence and their potential (...) improvement through hyper realistic immersion simulation training in military medical students.MethodsParticipants in this study consisted of 68 second year medical students representing five medical schools who were concurrently enrolled in the United States military scholarship program. During a six day hyper-realistic surgical simulation training course, students rotated through different roles of a medical team and responded to several mass-casualty scenarios. Hardiness and Emotional Intelligence were assessed using the Hardiness Resilience Gauge (HRG) and the Emotional Quotient Inventory (EQ-I 2.0) respectively, at two time points: on arrival (pre-event) and after completion of the course (post-event).ResultsHardiness and Emotional Intelligence scores and sub scores consistently improved from pre-event to post-event assessments. No difference in training benefit was observed between genders but differences were observed by age where age was more often associated with Emotional Intelligence. In addition, factor analysis indicated that the HRG and EQ-I 2.0 assessment tools measured predominately different traits although they share some commonalities in some components.ConclusionThis study indicates that Hardiness and Emotional Intelligence scores can be improved through immersion training in military medical students. Results from this study support the use of training course interventions and prompt the need for long term evaluation of improvement strategies on mitigating burnout symptoms. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Being an Interpreter—Beyond LinguisticsPatricia CoronadoInterpreting refers specifically to the process of listening to and analyzing a message received in one language, then recreating the same message and delivering it in another language, all while preserving the meaning. An interpreter should always maintain a professional distance and be neutral to both sides of the conversation. Could I truly walk this line and perform by the book for each encounter?At (...) one of my medical encounters as a Spanish interpreter, I found myself in the midst of a heart-wrenching situation that involved grappling with life and death. No mother ever wants to hear that her baby has a condition that could lead to death either at birth or shortly thereafter. I had the profound experience of witnessing a woman in the final days of her pregnancy come to terms with a devastating reality.Just before I began my duties as an interpreter, I was informed that the baby had a congenital defect in which they would be born without parts of the brain, a condition called anencephaly. If babies with anencephaly are born alive, they usually live only a few hours or days. They have no forebrain or cerebrum (the main thinking structure of the brain), and the remaining brain tissue is often not covered by bone or skin. The baby will be blind, deaf, unconscious, and unable to feel pain.I learned that anencephaly is a serious birth defect, and the cause is not completely understood, but it's believed to be caused by a combination of genetic factors such as mutations or abnormalities, family history of neural tube defects, folic acid deficiency and exposure to certain toxins, medications, chemicals or substances. Hispanic women are more likely than women of other ethnicities to have a baby with anencephaly.During my first session, the medical team had many questions for the mom. For each question, the mother's responses were brief; either a yes or no answer, even when I was acting as a clarifier to make sure there were no misunderstandings. In my head, I thought:• Maybe she is in denial.• Maybe she has faith that a miracle will happen.• Maybe she is just afraid to ask questions.The registered nurse wanted to make sure that mom had what she would need to be comfortable for the day of her delivery. I remember questions like:• Will the baby be baptized?• Would you like to have a priest or a chaplain from the hospital or church?• Would mom or dad cut the umbilical cord?• Do you have a special blanket to shelter the baby? [End Page E10]The mother remained strong and resilient, keeping her emotions inside, at least from my perspective. The meeting was calm.There was a second session in which the medical team invited me to be part of a private meeting to go over key points about this case prior to the delivery. I remember being introduced to the neonatologist, this extraordinary doctor who played a vital role as part of the medical care team.I immediately did my own research about the functions of a neonatologist—a medical professional who manages the care of babies who are born prematurely or with an illness or congenital disability, such as prematurity or congenital malformations (birth defects), among others.I was present on the day of delivery. As I interpreted the emotional complexity of this event, a deep sense of empathy washed over me. I realized I could serve by giving my love through my words, my silence, and my presence. I interpreted for the mom when there were English-speaking care providers, focusing on interpreting for the patient's mom and spouse when needed. I was quiet in the times when a Spanish-speaking care provider spoke to the patient and family. Lastly, I was available—the only person outside of the family who was present during the actual delivery who was not a nurse or doctor—to help interpret and provide support whenever needed.Even with intensely emotional encounters such as this, my commitment to providing support and assistance remained unwavering. I stayed calm, silently praying for the mother and her baby. In an... (shrink)

Background In 2021, Spain became the first Southern European country to grant and provide the right to euthanasia and medically assisted suicide. According to the law, the State has the obligation to ensure its access through the health services, which means that healthcare professionals’ participation is crucial. Nevertheless, its implementation has been uneven. Our research focuses on understanding possible ethical conflicts that shape different positions towards the practice of Medical Assistance in Dying, on identifying which core ideas may (...) be underlying them, and on suggesting possible reasons for this disparity. The knowledge acquired contributes to understanding its complexity, shedding light into ambivalent profiles and creating strategies to increase their participation. Methods We conducted an exploratory qualitative research study by means of semi-structured interviews (1 h) with 25 physicians and nurses from primary care (12), hospital care (7), and palliative care (6), 17 women and 8 men, recruited from Madrid, Catalonia, and Andalusia between March and May 2023. Interviews were recorded, transcribed, and coded in Atlas.ti software by means of thematic and interpretative methods to develop a conceptual model. Results We identified four approaches to MAiD: Full Support (FS), Conditioned Support (CS), Conditioned Rejection (CR), and Full Rejection (FR). Full Support and Full Rejection fitted the traditional for and against positions on MAiD. Nevertheless, there was a gray area in between represented by conditioned profiles, whose participation cannot be predicted beforehand. The profiles were differentiated considering their different interpretations of four core ideas: end-of-life care, religion, professional duty/deontology, and patient autonomy. These ideas can intersect, which means that participants' positions are multicausal and complex. Divergences between profiles can be explained by different sources of moral authority used in their moral reasoning and their individualistic or relational approach to autonomy. Conclusions There is ultimately no agreement but rather a coexistence of plural moral perspectives regarding MAiD among healthcare professionals. Comprehending which cases are especially difficult to evaluate or which aspects of the law are not easy to interpret will help in developing new strategies, clarifying the legal framework, or guiding moral reasoning and education with the aim of reducing unpredictable non-participations in MAID. (shrink)

The evidence-based medicine movement advocates basing all medical decisions on certain types of quantitative research data and has stimulated protracted controversy and debate since its inception. Evidence-based medicine presupposes an inaccurate and deficient view of medical knowledge. Michael Polanyi’s theory of tacit knowledge both explains this deficiency and suggests remedies for it. Polanyi shows how all explicit human knowledge depends on a wealth of tacit knowledge which accrues from experience and is essential for problem solving. Edmund Pellegrino’s (...) classic treatment of clinical judgment is examined, and a Polanyian critique of this position demonstrates that tacit knowledge is necessary for understanding how clinical judgment and medical decisions involve persons. An adequate medical epistemology requires much more qualitative research relevant to the clinical encounter and medical decision making than is currently being done. This research is necessary for preventing an uncritical application of evidence-based medicine by health care managers that erodes good clinical practice. Polanyi’s epistemology shows the need for this work and provides the structural core for building an adequate and robust medical epistemology that moves beyond evidence-based medicine. (shrink)

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

The existing literature in medical ethics does not serve the practical needs of medical students and trainees very well. Medical students or junior doctors often have their own set of ethical concerns and the dilemmas that arise are generally beyond their direct control. The editors have addressed the gap in the literature by compiling a series of case studies from around the world and inviting an international team of leading ethicists and clinicians to comment on (...) them. This volume includes over 80 actual cases that cover the range of possible problems a medical trainee may encounter on the ward. (shrink)

As in other countries, the traditional doctor-patient relationship in the Japanese healthcare system has often been characterised as being of a paternalistic nature. However, in recent years there has been a gradual shift towards a more participatory-patient model in Japan. With advances in technology, the possibility to use digital technologies to improve patient interactions is growing and is in line with changing attitudes in the medical profession and society within Japan and elsewhere. The implementation of an online patient engagement (...) platform is being considered by the Myotonic Dystrophy Registry of Japan. The aim of this exploratory study was to understand patients’ views and attitudes to using digital tools in patient registries and engagement with medical research in Japan, prior to implementation of the digital platform. We conducted an exploratory, cross-sectional, self-completed questionnaire with a sample of myotonic dystrophy patients attending an Open Day at Osaka University, Japan. Patients were eligible for inclusion if they were 18 years or older, and were diagnosed with MD. A total of 68 patients and family members attended the Open Day and were invited to participate in the survey. Of those, 59 % submitted a completed questionnaire. The survey showed that the majority of patients felt that they were not receiving the information they wanted from their clinicians, which included recent medical research findings and opportunities to participate in clinical trials, and 88 % of patients indicated they would be willing to engage with digital technologies to receive relevant medical information. Patients also expressed an interest in having control over when and how they received this information, as well as being informed of how their data is used and shared with other researchers. Overall, the findings from this study suggest that there is scope to develop a digital platform to engage with patients so that they can receive information about medical care and research opportunities. While this study group is a small, self-selecting population, who suffer from a particular condition, the results suggest that there are interested populations within Japan that would appreciate enhanced communication and interaction with healthcare teams. (shrink)

In 2017 and 2019, two research teams claimed ‘proof of principle’ for artificial womb technology (AWT). AWT has long been a subject of speculation in bioethical literature, with broad consensus that it is a welcome development. Despite this, little attention is afforded to more immediate ethical problems in the development of AWT, particularly as an alternative to neonatal intensive care. To start this conversation, I consider whether experimental AWT is innovative treatment or medical research. The research–treatment (...) distinction, pervasive in regulation worldwide, is intended to isolate research activities and subject them to a greater degree of oversight. I argue that there is a tendency in the literature to conceptualize AWT for partial ectogenesis as innovative treatment. However, there are sufficiently serious ethical concerns with experimental AWT that mean that it must not be first used on humans on the basis that it is a ‘beneficial treatment’. First, I outline the prospects for translation of AWT animal studies into treatment for human preterms. Second, I challenge the conceptualizations of experimental AWT as innovative treatment. It must be considered medical research to reflect the investigatory nature of the process and guarantee sufficient protections for subjects. Identifying that AWT is research is crucial in formulating further ethico‐legal questions regarding the experimental use of AWT. Third, I demonstrate that clinical trials will be a necessary part of the clinical translation of AWT because of requirements laid out by regulators. I consider the justification for clinical trials and highlight some of the crucial ethical questions about the conditions under which they should proceed. (shrink)

The risks associated with the techniques of medically assisted procreation (MAP) rapidly became well-known, and in such a short space of time that no biomedical domain remained untouched by the great deal of thinking and the expression of a multitude of opinions it provoked. MAP is evolving between two poles: quality/misuse (even violation) and evidence/fantasy. The ethics will be evoked in the clinical reality from which they spring and where their justification lies. The three objects common to these ethics, the (...) oocyte, the embryo and the child, are illustrated in this context. MAP has as its corollary access to the oocyte, the fertilization of which will take place in vitro. Access to the embryo, on the other hand, enables the clinician, for the purposes of diagnosis [preimplantation genetic diagnosis (PGD), predictive medicine], or even soon for therapeutic purposes (gene therapy) to draw close to a boundary, to trespass beyond which may be seen by humanity to threaten its very origins and integrity: the alienation of the human genome. For the infertile couple, the missing child may take on a dimension of which they would have been unaware, had they not been forced to express their desire. The burden of the imaginary child may, in this way, become a heavier load to bear when, after such desire, he comes into being. MAP puts the goal of normalisation within reach and, in doing so, accentuates the risk of the burden of the attributed representation of the child. On the one hand, MAP offers a tremendous diagnostic and therapeutic potential, while on the other it opens the door to excess and delirium. In this melting pot, ethics, catalysed by this new source of problematics, has discovered a favourite area in which to define and redefine itself. We propose the intervention of ethics on three different levels. Before the elaboration of the law: on first reflection, ethics may influence the responsibilities of the legislator, by taking care that the law does not obscure the biomedical and socioeconomic contexts of MAP and, thereby, also include other related and complementary aspects dealing with the same subject. The secondary discussion of ethics should influence the application of legal protection, by taking into account the rapid technological and social development of MAP, there too, by discussing the whole, rather than the details which will obscure the object. The ethical reflection of the clinician, who is aware of these difficulties, is guided by elements that are specific to his position as a doctor. The cohesion of the team around the clinician and the ethics specialist enables us to develop consensual clinical ethics that are transmissible and therefore teachable. This complex role can, in our view, only be acted out directly in the clinical situation, where the constant, direct relationship with the object of the reflection and the treatment allows ethics to take into account the contingencies of medical practice: we invite the ethics specialist to take part in our clinical activity on a daily basis. (shrink)

The author presents his view of the start of clinical medical ethics and ideas on where the broader field of bioethics is heading. In addition to clinical medical ethics, people with training in clinical ethics can enlarge the scope of their work in order to have additional real-world impact. Important opportunities abound in empirical research on medical ethics, the ethics of healthcare institutions, ethical issues regarding biomedical research, and public policy. Three topics for bioethics scholars (...) to address are artificial intelligence in clinical care, health disparities, and communicating persuasively to broader audiences beyond academia. (shrink)

In the past 50 years, an ethical-legal boundary has been drawn between treatment and research. It is based on the reasoning that the two activities pursue different purposes. Treatment is aimed at achieving optimal therapeutic benefits for the individual patient, whereas the goal of scientific research is to increase knowledge, in the public interest. From this viewpoint, the patient’s experience should be clearly distinguished from that of a participant in a clinical trial. On this premise, two parallel and (...) mutually exclusive regimes have been established. Yet in the case of deep brain stimulation (DBS), this presentation is a poor fit, for both the patient’s lived experience and medical practice and research. The frictions may be explained by the specificities of the treatment (including surgery and medical devices) and of the pathologies concerned (chronic and evolutive), and by the characteristics of the medical team implementing the treatment. These particularities challenge the dominant frame of reference in medical bioethics and cause difficulties for the current legal framework in fulfilling its dual role: to protect patients while supporting the development of innovative treatments. The dominant model is still the clinical trial for medication safety and legal requirements of drug market regulation. However, DBS forces us to reflect on a medical device that is permanently implanted in the brain by highly specialized multi-disciplinary neurosurgical teams, for the treatment of chronic evolutive diseases. These devices demand fine-tuning on a case-by-case basis and there is still a lot to discover about why DBS is effective (or not). As a result, the wall between treatment and research is osmotic: many discoveries are made incidentally, in the course of treatment. The following study begins with these observations, and suggests that we review legal provisions (especially in French and United States law) so that they are better adapted to the first-person needs and experience of the patient undergoing brain stimulation. (shrink)

It is unknown to what extent medical researchers generalize study findings beyond their samples when their sample size, sample diversity, or knowledge of conditions that support external validity do not warrant it. It is also unknown to what extent medical researchers describe their results with precise quantifications or unquantified generalizations, i.e., generics, that can obscure variations between individuals. We therefore systematically reviewed all prospective studies (n = 533) published in the top four highest ranking medical journals, (...) Lancet, New England Journal of Medicine (NEJM), Journal of the American Medical Association (JAMA), and the British Medical Journal (BMJ), from January 2022 to May 2023. We additionally reviewed all NEJM Journal Watch clinical research summaries (n = 143) published during the same time. Of all research articles reporting prospective studies, 52.5% included generalizations beyond specific national study populations, with the numbers of articles with generics varying significantly between journals (JAMA = 12%; Lancet = 77%) (p < 0.001, V = 0.48). There was no evidence that articles containing broader generalizations or generics were correlated with larger or more nationally diverse samples. Moreover, only 10.2% of articles with generalizations beyond specific national populations reported external validity strengthening factors that could potentially support such extrapolations. There was no evidence that original research articles and NEJM Journal Watch summaries intended for practitioners differed in their use of broad generalizations, including generics. Finally, from the journal with the highest citation impact, articles containing broader conclusions were correlated with more citations. Since there was no evidence that studies with generalizations beyond specific national study populations or with generics were associated with larger, more nationally diverse samples, or with reports of population similarity that may permit extensions of conclusions, our findings suggest that the generalizations in many articles were insufficiently supported. Caution against overly broad generalizations in medical research is warranted. (shrink)

This study examines the processes ofdecision-making used by intensive care(critical care) specialists. Ninety-ninespecialists completed a questionnaire involvingthree clinical cases, using a novel methodologyinvestigating the role of uncertainty andtemporal-related factors, and exploring a rangeof ethical issues. Validation and triangulationof the results was done via a comparison studywith a medically lay, but highly informed groupof 37 law students. For both study groups,constructing reasons for a decision was largelyan interpretative and imaginative exercise thatwent beyond the data (as presented), commonlyresulting in different reasons (...) supporting thesame conclusions and similar reasons supportingopposite conclusions. The skills of ethicalimagination and interpretation were related toan individual''s prior lived experience,construed in the broadest sense. Application ofthese skills of ethical imagination andinterpretation always occurred, to some degree,in a state of uncertainty and almost alwaysinvolved temporal relationships.Using these results, a theory of ethicaldecision-making is proffered. Three levels ortypes of reasoning processes may be present.Type I decision-making involves the applicationof rules, usually in a deductive fashion. TypeII decision-making is characterised by aprocess where a plurality of reasons arebalanced, weighed and sifted with each other.Type III decision-making is intimately linkedwith respondents lived experiences and `crafts''the content of type I and II reasoningprocesses, via the application of ethicalimagination and interpretation. Relationshipsbetween these three types of reasoningprocesses, and with narrative ethics, are alsodiscussed. (shrink)

Today, Yoga has acquired global recognition and an exalted status as an ancient health-building system. It is true that Yoga is powerful and contains the solutions for all the global problems. Yoga as a complete medical science and philosophy of life and accepts its scientific reasoning and basis. Yoga is not just a physical exercise but a holistic medical science; it is a philosophy of life, a spiritual knowledge. It is a profound philosophical thought process, but it is (...) also about having a simple, easy and balanced life-style. It is the path to gain eternal wisdom, ultimate truth and to unite the inner soul with the supreme soul through self-realization. It is a tradition in which sages have attained immeasurable bliss, indescribable happiness and inexplicable peace by entering the supreme consciousness which is present beyond mind. It is the science that inhibits the agitations of the mind and takes it to its highest level. Yoga is the spiritual journey from ignorance to knowledge, mortality to immortality, obvious to hidden and peace to ultimate tranquillity. It is the inner journey from thoughtfulness to emptiness, subjective to objective concentration, determinate to indeterminate samadhi and extrovertedness to introvertedness and being firm in judgement. This book is an humble attempt in this direction. We are determined to obtain more scientific evidence and build a science perspective not only for Yoga and Ayurveda but for the entire Vedic knowledge and wisdom. We shall lead the world in finding solutions for complex problems besetting humanity through the fusion of science and spiritualism. This book is the outcome of meticulous work put in by us in order to present various scientific standards used to test and validate this ancient system of Yoga, demographic study and personal experiences of several hundred people along with sufficient supporting proofs and documents. This is our first attempt to present Yoga backed by currently available scientific evidence, the goal is far more ambitious and the task of scientific documentation and research is an ongoing process. We will continue with the research and shall present new facts as they become available. (shrink)

Médecins Sans Frontières (MSF) is an independent medical humanitarian organisation working in over 70 countries. It has provided medical assistance for over 35 years to populations vulnerable through conflict, disease and inadequate health systems. Medical ethics define the starting point of the relationship between medical staff and patients. The ethics of humanitarian interventions and of research in conflict settings are much debated. However, less is known about the ethical dilemmas faced by medical humanitarian staff (...) in their daily work. Ethical dilemmas can be intensified in humanitarian contexts by insecure environments, lack of optimum care, language barriers, potentially heightened power discrepancies between care providers and patients, differing cultural values and perceptions of patients, communities and medical staff. Time constraints, stressful conditions and lack of familiarity with ethical frameworks can prevent reflection on these dilemmas, as can frustration that such reflection does not necessarily provide instant solutions. Lack of reflection, however, can be distressing for medical practitioners and can reduce the quality of care. Ethical reflection has a central role in MSF, and the organisation uses ethical frameworks to help with clinical and programmatic decisions as well as in deliberations over operational research. We illustrate and discuss some real ethical dilemmas facing MSF teams. Only by sharing and seeking guidance can MSF and similar actors make more thoughtful and appropriate decisions. Our aim in sharing these cases is to invite discussion and dialogue in the wider medical community working in crisis, conflict or with severe resource limitations. (shrink)

In this paper, we consider how the four key team emergent states for team learning identified by Bell, Kozlowski and Blawath (2012), namely psychological safety, goal orientation, cohesion, and efficacy, operate as a system that produces the team’s learning climate (TLC). Using the language of systems dynamics, we conceptualize TLC as a stock that rises and falls as a joint function of the psychological safety, goal orientation, cohesion, and efficacy that exists in the team. The systems (...) approach highlights aspects of TLC management that are traditionally overlooked, such as the simultaneous influence of and feedback between the four team emergent states and the inertia that TLC can have as a result. The management of TLC becomes an issue of controlling the system rather than each state as an independent force, especially because changing one part of the system will also affect other parts in sometimes unintended and undesirable ways. Thus the value is to offer a systems view on the leadership function of team monitoring with regards to team emergent states, which we term team state monitoring. This view offers promising avenues for future research as well as practical wisdom. It can help leaders remember that TLC represents an equilibrium that needs balance, in addition to pointing to the various ways in which they can influence such equilibrium. (shrink)

Despite extensive research and a multitude of computer systems, there is no viable computerized system that is even remotely capable of approaching the skill of an expert human physician. Minor obstacles in the design of a practical system include imprecise medical terminology, the use of nonindependent clinical parameters, incorrect or inaccurate information supplied to the computer, and static representation of a patient's medical history. Major problems that go beyond computer manipulation of data include the requirement for (...) a massive data base, representation of medical knowledge in general rather than specific terms, and physician fallibility in the design of a computer system. CiteULike Connotea Del.icio.us What's this? (shrink)

Background The impetus for policies promoting medical data sharing in China has gained significant traction. Nonetheless, the present legal and ethical framework governing the research use of medical data in China, is characterized by a more restrictive rather than permissive approach. The proportion of Chinese medical data being leveraged for scientific research still has room for improvement at present, indicating a significant untapped potential for advancing medical knowledge and improving healthcare outcomes. Building upon this (...) research, we aim to delve deeper into the challenges researchers encounter in the sharing of medical data through focus group interviews. Methods We conducted two focus group interviews study with researchers representing diverse disciplines to explore their perspectives on 21 June 2021 and 28 July 2021. A total of seventeen researchers willingly participated in this study, representing various professional backgrounds. Similar codes were merged. Research team discussions were also utilized to select interviewees’ statements that were regarded as typical or representative. Results The respondents demonstrated a strong understanding that medical data should not be disseminated arbitrarily, recognizing the importance of sharing data in compliance with laws. Through the interview, we found that although respondents stressed the importance of careful consideration regarding if and when this information can be responsibly released, none of the respondents raised the issue of necessitating consent from data subjects for the research use of medical data. This observation sharply contrasts with the stringent separate consent provisions for secondary data use outlined in the PIPL. Conclusions The findings from the focus group studies shed light on researchers’ barriers and ethical challenges towards medical data sharing for scientific research, highlighting their deep concern for data security and cautious approach to sharing. The key objectives aimed at facilitating and enabling the reuse of medical data encompass enhancing interoperability, harmonizing data standards, improving data quality, safeguarding privacy, ensuring informed consent, incentivizing patients, and establishing explicit regulations pertaining to data access and utilization. (shrink)

Background: Clinical ethics committees have been broadly implemented in university hospitals, general hospitals and nursing homes. To ensure the quality of ethics consultations, evaluation should be mandatory. Research question/aim: The aim of this article is to evaluate the perspectives of all people involved and the process of implementation on the wards. Research design and participants: The data were collected in two steps: by means of non-participating observation of four ethics case consultations and by open-guided interviews with 28 participants. (...) Data analysis was performed according to grounded theory. Ethical considerations: The study received approval from the local Ethics Commission (registration no.: 32/11/10). Findings: ‘Communication problems’ and ‘hierarchical team conflicts’ proved to be the main aspects that led to ethics consultation, involving two factors: unresolvable differences arise in the context of team conflicts on the ward and unresolvable differences prevent a solution being found. Hierarchical asymmetries, which are common in the medical field, support this vicious circle. Based on this, minor or major disagreements regarding clinical decisions might be seen as ethical conflicts. The expectation on the clinical ethics committee is to solve this (communication) problem, but the participants experienced that hierarchy is maintained by the clinical ethics committee members. Discussion: The asymmetrical structures of the clinical ethics committee reflect the institutional hierarchical nature. They endure, despite the fact that the clinical ethics committee should be able to detect and overcome them. Disagreements among care givers are described as one of the most difficult ethically relevant situations and should be recognised by the clinical ethics committee. On the contrary, discussion of team conflicts and clinical ethical issues should not be combined, since the first is a mandate for team supervision. Conclusion: To avoid dominance by physicians and an excessively factual character of the presentation, the case or conflict could be presented by both physicians and nurses, a strategy that strengthens the interpersonal and emotional aspects and also integrates both professional perspectives. (shrink)

Bioethics has been in existence now for more than twenty years. Much has changed, however, since Van Rensselaer Potter2 first used the term bioethics in 1971. For Potter, bioethics was an applied science with its roots in the biological sciences and its orientation towards the betterment of human life. Today the concept is used in a different context. It has become the name given to the ethical research that has become necessary in light of the new possibilities created by (...) revolutionary developments in medical science. Generally speaking, bioethics is concerned with the beginning and the end of life. In a certain sense, however, this is merely a de facto definition which does not possess a great deal of internal logical consistency.If we attempt to reconstruct the incredibly rapid evolution of bioethics we quickly realize how the times were truly ripe for this new discipline to begin to mature. In a very short space of time bioethics was taken seriously in just about every University and medical centre the world over. There is no part of the world which has not organised a colloquium or developed a study programme or created a Centre for Biomedical Ethics. Yet this advance is hardly surprising if we consider the fact that there have been revolutionary developments in themedical world in the 1960’s which have made it necessary to engage in serious ethical reflection on the borderline questions of human life.From the start, bioethicists have concerned themselves primarily with ethical problems related to reproductive technology such as in vitro fertilization, medically assisted fertilization with donor gametes, pregnancy termination, and the status of the embryo. More recently, however, questions concerning the end of life have entered the bioethicist’s field of interest, e.g. ethical questions related to euthanasia and the problems surrounding the artificial nutrition and hydration of persistently vegetative patients. In the meantime, of course, bioethics has broadened its field of interest beyond questions related to the beginning and end of life. Serious ethical and juridical reflection has resulted from the problems surrounding organ transplantation, transplantation of brain tissue, and the problem of AIDS.With the many recent developments in genetics, the first applications of gene therapy, and the world-wide human genome research project bioethics is assured an exciting future. It is clear that the issues which grab the bioethicist’s attention are rather disparate. Moreover, we are now beginning to realize that a whole gamut of specific questions cannot be addressed unless the broader context of the ethics of health care in general is taken into account. Such a realization has led to something of a new movement within the bioethical sphere which is interested in widening the notion of ‘medical ethics’ or ‘ethics of health’.The purpose of this article is to help familiarize the reader with the world of bioethics. Such a task is both simple and complex; bioethics has become a house with many rooms, a house, furthermore, which is being constantly renovated and rebuilt. By way of introduction, we shall take an investigative and evaluative stroll through the broad landscape bioethics has traced in the first twenty years of its existence. (shrink)

The article discusses the issue of the justification of experimenting on human subjects from the point of view of the individual participant. The discussion is conducted on three levels, which can be viewed as a hierarchy:I. Rationality: does one have good self-regarding reasons to subject oneself to medical experimentation?II. Justice: does one have a duty or an obligation to take part in medical research?III. Virtue: ought one contribute to the long-term attempt to promote medical knowledge and (...) the overall health of human beings?Rationality is shown to have only a limited force in such a justification, since many experiments cannot be shown to serve the interests of the participant in any way. Justice fares slightly better, since it is based on the idea of a social contract which goes beyond individual prudence. But, since many medical experiments promote the health only of future generations, the condition of mutuality, which is one of the bases of a social contract, is not satisfied. Thus, the ultimate reason to take part in medical research is associated with the supererogatory volunteering of people, who are motivated by the wish to contribute to a highly valuable enterprise with no expectation of return.The three types of reasons are complementary rather than exclusive, and the potential failure of all of them may lead to the undesirable commercialization of the field. Der Beitrag untersucht die Frage, ob und wie medizinische Versuche an Menschen aus der Sicht des einzelnen Teilnehmers gerechtfertigt werden können. Die Diskussion dieser Frage wird auf drei Ebenen geführt, die sich in einem Stufenverhältnis darstellen lassen,I. der Ebene der Zweckrationalität: Gibt es gute Gründe, und zwar durchaus des individuellen Eigennutzes, sich selbst für medizinische Versuche zur Verfügung zu stellen?II. der Ebene der Gerechtigkeit: Besteht eine Pflicht oder eine Verbindlichkeit zur Teilnahme an medizinischer Forschung?III. der Ebene der Tugend: Soll man zu dem auf lange Sicht angelegten Versuch beitragen, das medizinische Wissen und die Gesundheit der Menschen insgesamt zu fördern?Es wird gezeigt, daß das Argument der Zweckrationalität für eine mögliche Rechtfertigung nur von begrenzter Bedeutung ist. Denn viele Experimente dienen den Interessen des unmittelbaren Teilnehmers nachweislich in keiner Weise. Das Argument der Gerechtigkeit hat zwar eine etwas größere Kraft, weil Gerechtigkeit auf der Idee eines Gesellschaftsvertrags beruht, die über den Horizont individueller Klugheit hinausreicht. Da aber viele medizinische Experimente nur die Gesundheit zukünftiger Generationen fördern, ist die Bedingung der Gegenseitigkeit, die eine der Grundlagen des Gesellschaftsvertrags bildet, nicht erfüllt. Der dritte und letzte Grund für eine Teilnahme an medizinischer Forschung steht deshalb in enger Verbindung mit dem freiwilligen supererogatorischen Verhalten von Leuten, die durch den Wunsch motiviert sind, ohne Aussicht auf Gegenleistung zu einer höchst wertvollen Unternehmung etwas beizutragen.Die drei Arten von Gründen ergänzen sich mehr, als daß sie sich ausschließen. Ein mögliches Scheitern aller dieser Gründe könnte zu einer unerwünschten Kommerzialisierung der Teilnahme an medizinischen Experimenten führen. (shrink)

Bioethics has been in existence now for more than twenty years. Much has changed, however, since Van Rensselaer Potter2 first used the term bioethics in 1971. For Potter, bioethics was an applied science with its roots in the biological sciences and its orientation towards the betterment of human life. Today the concept is used in a different context. It has become the name given to the ethical research that has become necessary in light of the new possibilities created by (...) revolutionary developments in medical science. Generally speaking, bioethics is concerned with the beginning and the end of life. In a certain sense, however, this is merely a de facto definition which does not possess a great deal of internal logical consistency.If we attempt to reconstruct the incredibly rapid evolution of bioethics we quickly realize how the times were truly ripe for this new discipline to begin to mature. In a very short space of time bioethics was taken seriously in just about every University and medical centre the world over. There is no part of the world which has not organised a colloquium or developed a study programme or created a Centre for Biomedical Ethics. Yet this advance is hardly surprising if we consider the fact that there have been revolutionary developments in themedical world in the 1960’s which have made it necessary to engage in serious ethical reflection on the borderline questions of human life.From the start, bioethicists have concerned themselves primarily with ethical problems related to reproductive technology such as in vitro fertilization, medically assisted fertilization with donor gametes, pregnancy termination, and the status of the embryo. More recently, however, questions concerning the end of life have entered the bioethicist’s field of interest, e.g. ethical questions related to euthanasia and the problems surrounding the artificial nutrition and hydration of persistently vegetative patients. In the meantime, of course, bioethics has broadened its field of interest beyond questions related to the beginning and end of life. Serious ethical and juridical reflection has resulted from the problems surrounding organ transplantation, transplantation of brain tissue, and the problem of AIDS.With the many recent developments in genetics, the first applications of gene therapy, and the world-wide human genome research project bioethics is assured an exciting future. It is clear that the issues which grab the bioethicist’s attention are rather disparate. Moreover, we are now beginning to realize that a whole gamut of specific questions cannot be addressed unless the broader context of the ethics of health care in general is taken into account. Such a realization has led to something of a new movement within the bioethical sphere which is interested in widening the notion of ‘medical ethics’ or ‘ethics of health’.The purpose of this article is to help familiarize the reader with the world of bioethics. Such a task is both simple and complex; bioethics has become a house with many rooms, a house, furthermore, which is being constantly renovated and rebuilt. By way of introduction, we shall take an investigative and evaluative stroll through the broad landscape bioethics has traced in the first twenty years of its existence. (shrink)

Medicine is no stranger to patience. In fact, the word ‘patient’ has an etymology stemming from the Latin word ‘patiens’, describing the one who tolerates suffering.1 In this sense, the cornerstone of medicine, the patient–physician relationship, reflects passive language, ‘to suffer’. This suffering must be understood, and should be most intimately understood by those who provide care that is beyond a patient’s reach. The case of patients and their loved ones requesting medically futile care at the end of life (...) is one where further treatment is replaced by patience and, more rarely, the patience of medical teams is replaced by futile treatment. At the heart of this debate is not only the denial of futile care but also the need for understanding the extent of patience that must be endured as a result of it. Burns and Truog2 remark on this ethical dilemma: > The best solution – although perhaps also the most difficult – is…tolerating the demands for care that we believe to be futile, and finding ways to better support the emotional needs of each other in those rare cases where we are called on to provide this care. The concept of futility in care represents medical intervention with limited, or no, chance of resulting in what is regarded as a clinically successful outcome. Since the American Medical Association’s endorsement of the lack of consensus on futile care in 1999, this integral conflict remains.3 This is a conflict of understanding. I believe this understanding can be strengthened by acknowledging the Arabic word for patience, ‘ sabr ’, along …. (shrink)

A genuine bioethics would be fiercely devoted to human life (bios) and would express that devotion by articulating as well as advocating moral virtues that rigorously protect that value against the temptation to see life in purely instrumental terms. In my view, no genuine bioethics exists today. In what follows, I will question two fundamental assumptions often presumed in discussions of euthanasia and assisted suicide. These are (i) the agent does will her victim (i.e., her putative beneficiary) some significant human (...) good, e.g., relief from pain, escape from becoming a burden to loved ones, a dignified death, or simply self-determination; (ii) in purposely helping someone to kill herself or in killing her for her own good, the agent wills her no serious harm. Put differently, I question the assumption of ‘mercy’ in so-called ‘mercy-killing’. (shrink)

Background In June 2016, Canada legalized medical assistance in dying (MAiD). From the outset, some healthcare institutions (including faith-based and non-faith-based hospitals, hospices, and residential aged care facilities) have refused to allow aspects of MAiD onsite, resulting in patient transfers for MAiD assessments and provision. There have been media reports highlighting the negative consequences of these “institutional objections”, however, very little research has examined their nature and impact. Methods This study reports on findings from 48 semi-structured qualitative interviews (...) conducted with MAiD assessors and providers, MAiD team members (working to coordinate care and lead MAiD programs in institutions and health authorities), and family caregivers on their experiences with institutional objection. Participants were recruited from the Canadian provinces of British Columbia, Ontario, and Nova Scotia. Data were analyzed using inductive thematic analysis. Results Themes identified were: (1) basis for institutional objection (with objections commonly rooted in religious values and a particular philosophy of palliative care); (2) scope of objection (demonstrating a wide range of practices objected to); (3) lack of transparency regarding institutional position; (4) impacts on patients; (5) impacts on health practitioners; and (6) catalysts for change. Participants reported that many institutions’ objections had softened over time, lessening barriers to MAiD access and adverse impacts on patients and health practitioners. Participants attributed this positive change to a range of catalysts including advocacy by health practitioners and family members, policymaking by local health authorities, education, and relationship building. Nevertheless, some institutions, particularly faith-based ones, retained strong objections to MAiD, resulting in forced transfers and negative emotional and psychological impacts on patients, family members, and health practitioners. Conclusions This paper adds to the limited evidence base about the impacts of institutional objection and can inform practical and regulatory solutions in Canada and abroad. Reform is needed to minimize the negative impacts on patients, their caregivers, and health practitioners involved in MAiD practice. (shrink)

BackgroundIn gender-affirming medical care (GAMC), ethical challenges in decision-making are ubiquitous. These challenges are becoming more pressing due to exponentially increasing referrals, politico-legal contestation, and divergent normative views regarding decisional roles and models. Little is known, however, about what ethical challenges related to decision-making healthcare professionals (HCPs) themselves face in their daily work in GAMC and how these relate to, for example, the subjective nature of Gender Incongruence (GI), the multidisciplinary character of GAMC and the role HCPs play in (...) assessing GI and eligibility for interventions. Given the relevance and urgency of these questions, we conducted a qualitative study among HCPs providing GAMC to transgender adults in the Netherlands.MethodsIn this qualitative research, we conducted 11 semi-structured interviews between May 2020 and February 2021 with HCPs (six mental health professionals, two HCPs in endocrinology, two in plastic surgery, and one in nursing) working in two distinct GAMC settings. We purposively sampled for professional background and years of experience in GAMC. We analyzed our interview data using thematic analysis. As some respondents were more inclined to speak about what should or ought to be done to arrive at good or right decision-making, we identified both ethical challenges and norms. Furthermore, in our analysis, we differentiated between respondents’ explicit and implicit ethical challenges and norms and ascertained the specific context in which these challenges emerged.ResultsRespondents’ ethical challenges and norms centered on (1) dividing and defining decisional roles and bounds, (2) negotiating decision-making in a (multidisciplinary) team, and (3) navigating various decision-making temporalities. These themes arose in the context of uncertainties regarding (1) GAMC’s guidelines, evidence, and outcomes, as well as (2) the boundaries and assessment of GI.ConclusionsThis interview study provides detailed empirical insight into both the explicit and implicit ethical challenges that HCPs experience and their ethical norms regarding decision-making. It also describes how uncertainties and (implicit) normativities concerning GAMC and GI pre-structure the moral environment in which these challenges and norms manifest. We provide normative reflections and recommendations on handling these ethical challenges in a way that is sensitive to the context in which they arise. (shrink)

The main object of criticism of present-day medical ethics is the standard view of the relationship between theory and practice. Medical ethics is more than the application of moral theories and principles, and health care is more than the domain of application of moral theories. Moral theories and principles are necessarily abstract, and therefore fail to take account of the sometimes idiosyncratic reality of clinical work and the actual experiences of practitioners. Suggestions to remedy the illnesses of contemporary (...) medical ethics focus on re-establishing the connection between the internal and external morality of medicine. This article discusses the question how to develop a theoretical perspective on medical ethical issues that connects philosophical reflection with the everyday realities of medical practice. Four steps in a comprehensive approach of medical ethics research are distinguished: (1) examine health care contexts in order to obtain a better understanding of the internal morality of these practices; this requires empirical research; (2) analyze and interpret the external morality governing health care practices; sociological study of prevalent values, norms, and attitudes concerning medical-ethical issues is required; (3) creation of new theoretical perspectives on health care practices; Jensen's theory of healthcare practices will be useful here; (4) develop a new conception of bioethics that illuminates and clarifies the complex interaction between the internal and external morality of health care practices. Hermeneutical ethics can be helpful for integrating the experiences disclosed in the empirical ethical studies, as well as utilizing the insights gained from describing the value-contexts of health care practices. For a critical and normative perspective, hermeneutical ethics has to examine and explain the moral experiences uncovered, in order to understand what they tell us. (shrink)

Reconstructive allografts using Vascularized Composite Allotransplantation are providing individuals living with upper limb loss and facial disfigurement with new opportunities for a sensate, esthetically acceptable, and functional alternative to current treatment strategies. Important research attention is being paid to how best to assess and screen candidates for VCA, measure optimal patient outcomes, and support patient adherence to lifelong behaviors and medical regimens. Far less attention, however, has been dedicated to the team science required for these complex VCA (...) teams to form, prepare, and provide the highest quality clinical and psychosocial care to those receiving VCA. VCA teams are unique in that they require specialized team members whose scope of practice may not otherwise overlap. The team also needs to constantly negotiate balancing patient safety with multiple risks throughout the transplant process. This study aimed to elucidate the team science needed for this highly innovative and complex area of medicine. Using in-depth qualitative interviews with 14 VCA team members and observations at team meetings, we found that careful consideration of team composition, team structure, and organizational commitment influences team performance and patient outcomes, but that to be efficient and truly effective, teams need to commit to developing processes that foster collaboration. These processes are action-oriented, strategic and interpersonal. Dedication and commitment to team science allows teams to manage conflict under stress and exercise ways to leverage strengths to provide optimal performance or patient psychosocial and clinical outcomes. This study can provide insight into quality improvement efforts for VCA teams and guidance for other transplant programs that wish to consider expansion into VCA. (shrink)

The Jubilee Centre’s new report, Virtuous Medical Practice, examines the place of character and values in the medical profession in Britain today. Its findings are drawn from a UK-focused multi-methods study of 549 doctors and aspiring doctors at three career stages, first and final year students and experienced doctors.

This paper presents students’ views about honest and dishonest actions within the pharmacy and medical learning environments. Students also offered their views on solutions to ameliorating dishonest action. Three research questions were posed in this paper: (1) what reasons would students articulate in reference to engaging in dishonest behaviours? (2) What reasons would students articulate in reference to maintaining high levels of integrity? (3) What strategies would students suggest to decrease engagement in dishonest behaviours and/or promote honest behaviours? (...) The design of the study incorporated an initial descriptive analysis to interpret students’ responses to an 18-item questionnaire about justifications for dishonest action. This was followed by a qualitative analysis of students’ commentaries in reference to why students would engage in either honest or dishonest action. Finally a qualitative analysis was conducted on students’ views regarding solutions to dishonest action. The quantitative results showed that students were more likely to use time management and seriousness justifications for dishonest actions. The qualitative findings found that students’ actions (honest or dishonest) were guided by family and friends, the need to do well, issues of morality and institutional guidelines. Students suggested that dishonest action could be ameliorated by external agencies and polarised views between punitive and rewards-based mechanisms were offered. These results suggest that these students engaged in dishonest action for various reasons and solutions addressing dishonest action need to consider diverse mechanisms that likely extend beyond the educational institution. (shrink)

In this article, we explore questions about the culture of trustworthy artificial intelligence (AI) through the lens of ecosystems. We draw on the European Commission’s Guidelines for Trustworthy AI and its philosophical underpinnings. Based on the latter, the trustworthiness of an AI ecosystem can be conceived of as being grounded by both the so-called rational-choice and motivation-attributing accounts—i.e., trusting is rational because solution providers deliver expected services reliably, while trust also involves resigning control by attributing one’s motivation, and hence, goals, (...) onto another entity. Our research question is: What aspects contribute to a responsible AI ecosystem that can promote justifiable trustworthiness in a healthcare environment? We argue that especially within devising governance and support aspects of a medical AI ecosystem, considering the so-called motivation-attributing account of trust provides fruitful pointers. There can and should be specific ways and governance structures supporting and nurturing trustworthiness beyond mere reliability. After compiling a list of preliminary requirements for this, we describe the emergence of one particular medical AI ecosystem and assess its compliance with and future ways of improving its functioning as a responsible AI ecosystem that promotes trustworthiness. (shrink)

Clinical ethics support, including ethics consultation, has become established in the field of medical practice throughout the world. This practice has been regarded as useful, most notably in the UK and the USA, in solving ethical problems encountered by both medical practitioners and those who receive medical treatment. In Japan, however, few services are available to respond to everyday clinical ethical issues, although a variety of difficult ethical problems arise daily in the medical field: termination of (...) life support, euthanasia and questions about patient autonomy. In light of these conditions, a group of 17 volunteer educators and researchers from the area of biomedical ethics, including the authors, have formed the Clinical Ethics Support and Education Project, and began providing Japan’s first small team clinical ethics consultation service in October, 2006. Members include scholars of biomedical ethics, scholars of philosophy and ethics, legal professionals and legal scholars, nurses and doctors, consisting of five women and 12 men. Consultation teams, made up of a small number of members, were organised each time a request for consultation was received. Over approximately 15 months (October 2006–December 2007), the programme received 22 consultation requests from medical practitioners and medical institutions, and three from the families of patients. In this paper, we will discuss the status of our consultation service and examples of consultation cases we have handled. In addition, we will examine the process of evaluating small team clinical ethics consultation services, as well as the strengths and weakness of such programmes. (shrink)

Summary Principles Timely support for patients and people close to them, and effective, sensitive communication are essential. Decisions must be based on the individual patient's circumstances and reviewed regularly. Sensitive advance discussion should always be encouraged, but not forced. Information about CPR and the chances of a successful outcome needs to be realistic. Practical matters Information about CPR policies should be displayed for patients and staff. Leaflets should be available for patients and people close to them explaining about CPR, how (...) decisions are made and their involvement in decisions. Decisions about attempting CPR must be communicated effectively to relevant health professionals. In emergencies If no advance decision has been made or is known, CPR should be attempted unless: the patient has refused CPR; the patient is clearly in the terminal phase of illness; or the burdens of the treatment outweigh the benefits. Advance decision making Competent patients should be involved in discussions about attempting CPR unless they indicate that they do not want to be. Where patients lack competence to participate, people close to them can be helpful in reflecting their views. Legal issues Patients' rights under the Human Rights Act must be taken into account in decision making. Neither patients nor relatives can demand treatment which the health care team judges to be inappropriate, but all efforts will be made to accommodate wishes and preferences. In England, Wales and Northern Ireland relatives and people close to the patient are not entitled in law to take health care decisions for the patient. In Scotland, adults may appoint a health care proxy to give consent to medical treatment. Health professionals need to be aware of the law in relation to decision making for children and young people.IntroductionWhy policies are neededCardiopulmonary resuscitation can be attempted on any person whose cardiac or respiratory functions cease. Failure of these functions is part of dying and thus …. (shrink)

The role of individual life accounts has been promoted--largely through what has come to be described as narrative ethics-as important to the practice of medical ethics for a number of years. Beyond this the apparent incompatibility of personal stories with scientific procedure has limited their use. In this article I will argue that this represents a serious under-utilisation of a valuable method for researching ethical dilemmas and the settings in which these dilemmas are played out. Life stories need (...) not simply provide a stimulus to scientific research but can in themselves yield intellectually robust evidence on the general as well as the particular. By drawing on the rigorous methods developed elsewhere, personal accounts not only allow us to "enter the world of the sick person" but allow us to do so in such a way as to contribute to empirical and theoretical knowledge. (shrink)

Textbooks have played the leading role in academic education for centuries and their form has evolved, adapting to the needs of students, teachers and technological possibilities. Advances in technology have caused educators to look for new sources of knowledge development, which students could use inside and outside the classroom. Today’s sophisticated learning tools range from virtual environments to interactive multimedia resources, which can be called e-textbooks. Different types of new educational materials that go beyond printed books are now used (...) to support the academic curriculum, with the most interesting ones exemplified in this article to show their value in medical and life sciences education. Certain interesting attempts by Polish publishers at applying technology to support both self-paced and tutor-paced student learning in the medical profession and related areas are presented. The data was collected through a review of literature, discussions with e-learning specialists and medical students, as well as an analysis of examples of good practices. The article also discusses the results of a countrywide survey on the use of e-textbooks to enhance medical education. The research investigates the targeted academic staff’s attitudes towards the use of e-textbooks, the limitations of their implementation, and the character of e-resources currently used by Polish higher education medical institutions. (shrink)

This document is designed to give guidance on assessing researchers in bioethics/medical ethics. It is intended to assist members of selection, confirmation and promotion committees, who are required to assess those conducting bioethics research when they are not from a similar disciplinary background. It does not attempt to give guidance on the quality of bioethics research, as this is a matter for peer assessment. Rather it aims to give an indication of the type, scope and amount of (...) research that is the expected in this field. It does not cover the assessment of other activities such as teaching, policy work, clinical ethics consultation and so on, but these will be mentioned for additional context. Although it mentions the UK’s Research Excellence Framework, it is not intended to be a detailed analysis of the place of bioethics in the REF. (shrink)

A history of injustices to diverse groups of human subjects in medical research has resulted in concerted efforts by U.S. policymakers in the second half of the twentieth century to provide greater protection for future subjects. However, in the context of patient populations demanding better therapies, potential medical advances, and greater attention to issues of social justice, Kahn, Mastroianni, and Sugarman set out to reconceptualize the principle of justice in human subjects research to address these urgent (...) concerns. In BeyondConsent, Kahn and colleagues advance a framework of justice in terms of access to participation in research, instead of protection. Their worthy cause, developed out of collaboration on the White House Advisory Committee on Human Radiation Experiments, aims to demonstrate how previously unaddressed notions of justice now require greater consideration in research. Specifically, they emphasize how fairness requires a greater distribution of risks and benefits, and that The volume does not report new research findings but rather draws on multidisciplinary approaches, including law, medicine, philosophy, history, and health policy, to argue that justice must go beyond informed consent. The editors posit that this challenge to protectionism is necessary given the heightened urgency for patients to benefit from investigational therapies although they incur increased risks. (shrink)

Participation in research is supposed to be voluntary and informed. Yet it is difficult to ensure people are adequately informed about the potential uses of their biological materials when they donate samples for future research. We propose a novel consent framework which we call “demonstrated consent” that leverages blockchain technology and generative AI to address this problem. In a demonstrated consent model, each donated sample is associated with a unique non-fungible token (NFT) on a blockchain, which records in (...) its metadata information about the planned and past uses of the sample in research, and is updated with each use of the sample. This information is accessible to a large language model (LLM) customized to present this information in an understandable and interactive manner. Thus, our model uses blockchain and generative AI technologies to track, make available, and explain information regarding planned and past uses of donated samples. (shrink)

Very few data exist in France on: (1) nurses’ knowledge and behaviour concerning ethical decisions in clinical practice; and (2) their knowledge of ethical rules in clinical research. This questionnaire-based audit tried mainly to assess these questions in a large French university teaching hospital. Of the 257 questionnaires distributed to nurses in 23 clinical units of the hospital, 206 were returned (80% response rate). When responding to the vignette describing a clinical situation requiring an ethical decision to be made, (...) most nurses acted as the patient’s advocate although they have had no formal training in ethics. Indeed, 66% of nurses responding considered that the patients themselves should be the primary decision makers in situations that relate to their health and medical care. For children or comatose patients, the decision should be left to the relatives according to 72% of the responses. The results indicated that the role of health care professionals in ethical decisions made for a given patient should be marginal. Nurses’ knowledge concerning research protocols, particularly their ethical requirements and consequences, is poor at present and information from and communication with doctors should be improved. (shrink)

Protecting confidentiality is an essential value in all human relationships, no less in medical practice and research.1 Doctor-patient and researcher-participant relationships are built on trust and on the understanding those patients' secrets will not be disclosed.2 However, this confidentiality can be breached in some situations where it is necessary to meet a strong conflicting duty.3Confidentiality, in a general sense, has received much interest in Islamic resources including the Qur'an, Sunnah and juristic writings. However, medical and research (...) confidentiality have not been explored deeply. There are few fatwas about the issue, despite an increased effort by both individuals and Islamic medical organizations to use these institutional fatwas in their research.Infringements on confidentiality make up a significant portion of institutional fatwas, yet they have never been thoroughly investigated. Moreover, the efforts of organizations and authors in this regard still require further exploration, especially on the issue of research confidentiality.In this article, we explore medical and research confidentiality and potential conflicts with this practice as a result of fatwas released by international, regional, and national Islamic Sunni juristic councils. We discuss how these fatwas affect research and publication by Muslim doctors, researchers, and Islamic medical organizations.We argue that more specialized fatwas are needed to clarify Islamic juristic views about medical and research confidentiality, especially the circumstances in which infringements on this confidentiality are justified. (shrink)

If I am injured in the course of medical investigation or treatment, I may be eligible to receive compensation for some of the adverse consequences of my injury—at least, if I live in a developed country. In most such countries, there exists some form of state-administered compensation scheme for medical injuries. However, even within the developed world, there is considerable variation in the eligibility criteria for compensation. Different countries would, for example, respond very differently to the following pair (...) of cases... (shrink)

Military metaphors are pervasive in biomedicine, including HIV research. Rooted in the mind set that regards pathogens as enemies to be defeated, terms such as “shock and kill” have become widely accepted idioms within HIV cure research. Such language and symbolism must be critically examined as they may be especially problematic when used to express scientific ideas within emerging health-related fields. In this article, philosophical analysis and an interdisciplinary literature review utilizing key texts from sociology, anthropology, history, and (...) Chinese and African studies were conducted to investigate the current proliferation of military metaphors. We found the use of these metaphors to be ironic, unfortunate, and unnecessary. To overcome military metaphors we propose to give them less aggressive meanings, and/or replace them with more peaceful metaphors. Building on previous authors' work, we argue for the increased use of “journey” metaphors as meaningful, cross-culturally app... (shrink)