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Background: Obstetricians often times find themselves in a conflict of right and duty with their patients, when these patients refuse recommended treatment. On the one hand, the obstetrician, aiming to fulfil the duty of care, recommends a treatment in the best interest of the woman. The woman, on the other hand, exercising her right of self-determination and autonomy, declines the recommended treatment., Materials and Methods: A search was conducted for literature, articles and case reports on the subject on PubMed/MEDLINE and Google Scholar using the keywords: medical ethics, medical law, obstetric mortality, maternal medicine, foetal medicine, patient autonomy, informed consent, right to life and right to liberty., Results: Opinions have historically differed on whether maternal or foetal rights should be deferred to in situations where pregnant women refuse obstetric interventions. So also have legal decisions on the issue. The general consensus is, however, to respect a woman's refusal of recommended medical treatment, in deference to her right of self-determination and autonomy. The obstetric outcomes in such instances are however, often times, unfavourable., Conclusion: The ethics of patient care in the face of conflicting rights deserves renewed examination and discourse., (© The Author(s) 2024. Published by Oxford University Press on behalf of Fellowship of Postgraduate Medicine. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Background: Ethical behavior of health workers is an important part of health services. The aim of the present study was to determine the relationship between ethics and professional commitment and its relationship with the level of respect for patient rights in medical students., Material & Methods: A cross-sectional descriptive study was conducted with the participation of nursing, midwifery and emergency medicine students of Ilam University of Medical Sciences. Sampling was done by stratified random method. The data was collected using Demographic, Professional Commitment, Professional ethics and a researcher made questioner on compliance with patient rights questionnaires., Results: 300 students were participated. The results showed that the average score of professional ethics in middle school students is high (64.07 ± 8.01), the average score of professional commitment is also high (64.07 ± 8.01) and the score of respect for patient rights is also high (10.74). ± 83.46) was obtained. The professional ethics score it showed a positive and statistically significant relationship with the patient's rights compliance score. only professional commitment is related to gender, but the average of all three variables in different age groups and the type of residence (dormitory, private home, etc.) have meaningful statistical difference., Conclusion: The findings of the study show that the level of ethics and professional commitment and respect for patient rights among nursing, midwifery and emergency medicine students was good. It is hoped that the results of this research will provide a basis for better planning for the development of knowledge and respect for patient rights among students., (© 2024. The Author(s).)

Introduction: Doctors hold a prima facie duty to respect the autonomy of their patients. This manifests as the patient's 'right' not to know when patients wish to remain unaware of medical information regarding their health, and poses ethical challenges for good medical practice. This paper explores how the emergence of digital health technologies might impact upon the patient's 'right' not to know., Method: The capabilities of digital health technologies are surveyed and ethical implications of their effects on the 'right' not to know are explored., Findings: Digital health technologies are increasingly collecting, processing and presenting medical data as clinically useful information, which simultaneously presents large opportunities for improved health outcomes while compounding the existing ethical challenges generated by the patient's 'right' not to know., Conclusion: These digital tools should be designed to include functionality that mitigates these ethical challenges, and allows the preservation of their user's autonomy with regard to the medical information they wish to learn and not learn about., (© 2024 The Authors. Journal of Evaluation in Clinical Practice published by John Wiley & Sons Ltd.)

The purpose of this paper is to delve into the ethical aspects experienced by the healthcare team when they receive the directive to limit therapeutic effort or a do-not-resuscitate order. From an interpretative, qualitative paradigm with a content analysis approach, a process based on three phases was conducted: pre-analysis in which categories were identified, the projection of the analysis, and inductive analysis. During 2023, interviews were conducted in the clinical setting of a high-complexity hospital in Chile with 56 members of the healthcare teams from critical and emergency units, from which four categories emerged: a) the risk of violating patients' rights by using do-not-resuscitate orders and limiting therapeutic effort; b) the gap in the interpretation of the legal framework addressing the care and attention of patients at the end of life or with terminal illnesses by the healthcare team; c) ethical conflicts in end-of-life care; and d) efficient care versus holistic care in patients with terminal illness. There are significant gaps in bioethics training and aspects of a good death in healthcare teams facing the directive to limit therapeutic effort and not resuscitate. It is suggested to train personnel and work on a consensus guide to address the ethical aspects of a good death.

Telemedicine, defined as the practice of delivering healthcare services remotely using information and communications technologies, raises a plethora of ethical considerations. As telemedicine evolves, its ethical dimensions play an increasingly pivotal role in balancing the benefits of advanced technologies, ensuring responsible healthcare practices within telemedicine environments, and safeguarding patient rights. Healthcare providers, patients, policymakers, and technology developers involved in telemedicine encounter numerous ethical challenges that need to be addressed. Key ethical topics include prioritizing the protection of patient rights and privacy, which entails ensuring equitable access to remote healthcare services and maintaining the doctor-patient relationship in virtual settings. Additional areas of focus encompass data security concerns and the quality of healthcare delivery, underscoring the importance of upholding ethical standards in the digital realm. A critical examination of these ethical dimensions highlights the necessity of establishing binding ethical guidelines and legal regulations. These measures could assist stakeholders in formulating effective strategies and methodologies to navigate the complex telemedicine landscape, ensuring adherence to the highest ethical standards and promoting patient welfare. A balanced approach to telemedicine ethics should integrate the benefits of telemedicine with proactive measures to address emerging ethical challenges and should be grounded in a well-prepared and respected ethical framework.

Acute coronary syndrome (ACS) is one of the main causes of mortality and morbidity in the elderly. The prevalence of ACS increases with age and patients with advanced age have some co-morbidities that require an individualized approach, which includes a comprehensive geriatric assessment. Ageism is a matter of great concern. In this scenario, some ethical conflicts may arise which should be anticipated, considered, and solved. Clinicians will need to prioritize and allocate resources, to avoid futility/proportionality, which is not always easy to assess in these patients. This review aims to summarize the evidence regarding ethical conflicts that may arise in the management of patients with ACS and advanced age. We will discuss how to choose the best option (which frequently is not the only one) with the lowest risk for harm, considering and respecting the patients' decision. The four basic principles of bioethics (beneficence, non-maleficence, autonomy, and justice) are thoroughly reviewed, and discussed, regarding their role in the decision making process., Competing Interests: The authors declare no conflict of interest. Manuel Martínez-Sellés is serving as one of the Guest editors of this journal. We declare that Manuel Martínez-Sellés had no involvement in the peer review of this article and has no access to information regarding its peer review. Full responsibility for the editorial process for this article was delegated to Peter A. McCullough., (© 2022 The Author(s). Published by IMR Press.)

Abstract: In the modern era, when prolonging life is not an option, the end-of-life discussions are unavoidably influenced by Neuroethics. Despite this, it is interestingly evident how the sentiments of a terminal patient of 1885 and a physician of 2020, are still comparable. This paper pre-sents the arguments behind the so-called "Therapeutic Misconception" and the aim of palliative care to provide dying patients support. It is essential to address priorities of informed consent, signed before any remedy is provided. A key component of the newest Neuroscience research is the analysis of motivation and free will. So, it is necessary to comprehend if the patient struggles to feel at peace with these aspects of his "right to die": Is he free to choose or is he influenced by the doctors? Is this confusion an example of "Therapeutic Misconception"? Is his Informed Consent totally "Informed"? In order to broaden our understanding, we account for many critical situations, such as the mentally impaired Psychiatric patients or the famous Italian case of Eluana Englaro. In addition, we suggested some current approaches such as Artificial Intelligence, useful in preserving some cognitive functions the patient may have lost. Furthermore, research in this field is very critical and in some Catholic countries like Italy, people faced difficulties accepting the idea of the "Anticipated directives". In general, whatever the mental status and whatever the terminal state, the patients seem still far from handling their own auto-determination and their Consent, even if the ultimate goal is to die with dignity.

Competing Interests: The author certifies that there are no funding or commercial associations (consultancies, stock ownership, equity interest, patent/licensing arrangements, etc.) that might pose a conflict of interest in connection with the submitted article related to the author or any immediate family members. All ICMJE Conflict of Interest Forms for authors and Clinical Orthopaedics and Related Research® editors and board members are on file with the publication and can be viewed on request.

Requesting that serious diagnoses be concealed from patients, a widespread phenomenon in many cultures, presents a professional dilemma. Practical and sensitive communication strategies are needed., Methodology: In this paper, we use analysis of the existing literature to develop a communication tool for practitioners facing requests for diagnostic non-disclosure. Our approach builds on existing strategies, in providing a mnemonic communication tool, permitting more than one outcome, and focusing on the need for mutual understanding and cooperation., Results: Existing work on this dilemma highlights the need to appreciate the family's standpoint, affirm their benevolent intentions and correct misperceptions. To this end, we have developed a mnemonic tool, 'ARCHES', to be used in situations where the family has requested diagnostic non-disclosure. The model has six stages: acknowledge the request for non-disclosure, build the relationship, find common ground, honour the patient's preferences and outline the harm of non-disclosure, provide emotional support and devise a supportive solution., Conclusion: Facing requests for diagnostic non-disclosure is a challenge of communication. The dilemma is particularly marked when practising across cultures. Our model gives a structure for building rapport with the family and realigning their misperceptions while upholding the patient's right to knowledge., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2021. No commercial re-use. See rights and permissions. Published by BMJ.)

The WHO Ad Hoc Expert Group on the Next Steps for Covid-19 Vaccine Evaluation makes recommendations on the use of placebo controlled trials in ongoing and future Covid-19 vaccine research. These recommendations unequivocally prioritise data quality over participants' rights and safety. Participants in trials of vaccines which have received emergency use listing or authorisation would be refused available vaccines. Placebo-controlled trials that would be impossible to conduct in rich countries would be permitted in poor countries. If these suggestions are implemented, the major beneficiary will be the vaccine industry.

Background: In British Columbia (BC), Canada, clinicians are responsible for giving involuntary psychiatric patients rights information upon admission. Yet an investigation by the BC Office of the Ombudsperson found that clinicians are not always fulfilling this responsibility. The Ombudsperson recommended that the provincial government fund an independent body to give rights advice to patients., Methods: To understand how clinicians feel about this recommendation, focus groups of clinicians who may give psychiatric patients rights information (n = 81) were conducted in Vancouver, BC, to probe their attitudes toward independent rights advisors. The focus group transcripts were thematically analyzed., Results: Most clinicians believe that giving rights information is within their scope of practice, although some acknowledge that it poses a conflict of interest when the patient wishes to challenge the treatment team's decisions. Participants' chief concerns about an independent rights-advice service were that (a) patients may experience a delay in receiving their rights information, (b) integrating rights advisors into the workflow would complicate an already chaotic admission process, and (c) more patients would be counselled to challenge their hospitalization, leading to an increased administrative workload for clinical staff. However, many participants believed that independent rights advisors would be a positive addition to the admission process, both allowing clinicians to focus on treatment and serving as a source of rights-related information., Conclusions: Participants were generally amenable to an independent rights-advice service, suggesting that the introduction of rights advisors need not result in an adversarial relationship between treatment team and patient, as opponents of the proposal fear. Clearly distinguishing between basic rights information and in-depth rights advice could address several of the clinicians' concerns about the role that independent rights advisors would play in the involuntary admission process. Clinicians' and other stakeholders' concerns should be considered as the province develops its rights-advice service., Competing Interests: The authors have declared that no competing interests exist.

Emergency contraception (EC) has been prescribed for decades, in order to lessen the risk of unplanned and unwanted pregnancy following unprotected intercourse, ordinary contraceptive failure, or rape. EC and the linked aspect of unintended pregnancy undoubtedly constitute highly relevant public health issues, in that they involve women's self-determination, reproductive freedom and family planning. Most European countries regulate EC access quite effectively, with solid information campaigns and supply mechanisms, based on various recommendations from international institutions herein examined. However, there is still disagreement on whether EC drugs should be available without a physician's prescription and on the reimbursement policies that should be implemented. In addition, the rights of health care professionals who object to EC on conscience grounds have been subject to considerable legal and ethical scrutiny, in light of their potential to damage patients who need EC drugs in a timely fashion. Ultimately, reproductive health, freedom and conscience-based refusal on the part of operators are elements that have proven extremely hard to reconcile; hence, it is essential to strike a reasonable balance for the sake of everyone's rights and well-being.

This essay argues that the discrimination that fat patients face is an issue of health justice. Insofar as this is the case, bioethicists and health care providers should not only care about it but also work to dismantle the systematic, institutional, social, and individual factors that are contributing to it to ensure that fat patients receive high-quality health care, free of stigma and discrimination. The essay discusses a variety of ways in which fat patients are discriminated against and considers the false assumptions that fuel such discrimination. It concludes by considering the structural and social issues that contribute to fatness and pushes health care providers to abandon the assumption that being fat is an individual moral failing. Ultimately, the paper argues, "fat" is not necessarily a bad word, nor one that health care providers should avoid., (© 2020 The Hastings Center.)

Over time, medical law has moved away from paternalism in favour of an approach grounded in patients' rights. Using Montgomery v Lanarkshire Health Board (2015) as a case study, we offer a deeper analysis of this emerging approach. We argue that patients' rights should be evaluated in terms of their contribution to making medical law more socially responsive, by developing it to give effect to social needs and aspirations pertaining to health care. Although rights can play an important role in achieving social responsiveness, they also carry the risk of entrenching approaches unrepresentative of patients' actual needs and empirical realities. This is evident in Montgomery, where the law, despite being derived from General Medical Council (GMC) guidance, has effects that differ significantly from the GMC's goals. Drawing on socio-legal literature, we outline a new approach for guiding the use of rights in medical law focused on the functional consequences of rights in facilitating patients' aspirations, and the capacity of rights to respond to social and institutional contexts in which medical interaction occurs. We conclude by showing how this approach, applied to informed consent, would produce a different and arguably a superior duty, providing a sounder basis for responding to patient needs., (© The Author(s) 2020. Published by Oxford University Press; All rights reserved. For permissions, please email: journals.permissions@oup.com.)

There are no egalitarians in a pandemic. The scale of the challenge for health systems and public policy means that there is an ineluctable need to prioritize the needs of the many. It is impossible to treat all citizens equally, and a failure to carefully consider the consequences of actions could lead to massive preventable loss of life. In a pandemic there is a strong ethical need to consider how to do most good overall. Utilitarianism is an influential moral theory that states that the right action is the action that is expected to produce the greatest good. It offers clear operationalizable principles. In this paper we provide a summary of how utilitarianism could inform two challenging questions that have been important in the early phase of the pandemic: (a) Triage: which patients should receive access to a ventilator if there is overwhelming demand outstripping supply? (b) Lockdown: how should countries decide when to implement stringent social restrictions, balancing preventing deaths from COVID-19 with causing deaths and reductions in well-being from other causes? Our aim is not to argue that utilitarianism is the only relevant ethical theory, or in favour of a purely utilitarian approach. However, clearly considering which options will do the most good overall will help societies identify and consider the necessary cost of other values. Societies may choose either to embrace or not to embrace the utilitarian course, but with a clear understanding of the values involved and the price they are willing to pay., (© 2020 John Wiley & Sons Ltd.)

Background: There are shortcomings in nurses' adherence to ethical principles in practice. The present study aims to investigate the effectiveness of teaching nursing ethics via scenario-based learning and group discussion in nurses' adherence to codes of ethics and patients' satisfaction with nurses' performance., Methods: Using a quasiexperimental design, the present study employed questionnaires which measure nurses' compliance with nursing codes of ethics and patients' satisfaction with nursing care before, immediately after, and one month after intervention. The collected data were analyzed using the independent t -test, ANOVA, and chi-square test in SPSS v.22. The level of significance was set at p < 0.05. The nurses ( n  = 80) and patients ( n  = 160) from various units of two university hospitals in the south-west of Iran participated in the present study., Results: The pretest mean scores of the intervention and control groups in patient rights and patients' satisfaction with nursing care were not significantly different ( p =0.07, p =0.21). Yet, there were statistically significant differences between the groups' mean scores as calculated immediately after ( p < 0.001, p < 0.001) and one month after intervention ( p < 0.001, p < 0.001)., Conclusion: Employment of new approaches to teach nursing ethical principles improves compliance with nursing ethical codes and patients' satisfaction with nurses' performance., Competing Interests: The authors declare that there are no conflicts of interest regarding the publication of this paper., (Copyright © 2020 Fatemeh Izadi et al.)

In this paper present, from a bioethical perspective, a reflection on how to reconcile efforts to combat the COVID-19 pandemic with the safeguard of human rights. To do this, I develop three points. First, the regulatory framework that justifies the restriction or suspension of rights in the face of serious threats to public health. Second, the declarations of the international bioethics committees on the way in which human rights should be protected during public health crisis. And third, a review of the main rights threatened both by the public health crisis and by the means adopted to combat it. Before going into each of these points, I offer a preliminary note to clarify certain legal concepts and underline the need to overcome disjunctive approaches in considering human rights.

Background: Human rights are an important part of nursing practice. Although there is increasing recognition regarding the importance of including human rights education in nursing education, few studies have focused on nursing students' perspectives and experiences in relation to human rights in nursing, especially regarding older nursing home residents' right to food., Objective: To explore nursing students' perspectives and experiences in relation to the right to food., Research Design: The study followed a qualitative interpretative research design. Data were collected from multistage focus groups before, during and after clinical placement in a nursing home and analysed through thematic analysis., Participants and Research Context: Participants were 18 first-year nursing students; the study was conducted in 2017., Ethical Considerations: This study was approved by the Norwegian Centre for Research Data., Findings: Students' understanding of older nursing home residents' right to food was a dynamic process. Their perceptions evolved from a polarized perspective to a reality orientation and finally to retrospective reflection., Discussion: The article discusses how nursing students learn about and understand human rights within and throughout their placements., Conclusion: The study bridges human rights theory and practice. Findings suggest that the human right to food must be enacted in daily practice for students to learn in context. Human rights education, specifically pertaining to nutritional care, thus benefits from a practice-oriented approach preparing students to face 'real life' challenges and ethical dilemmas. Findings will help nurse educators tailor education in this field.

Medical decision-making in children is not a static process. In pediatrics, parents and health professionals actively participate in clinical decision-making. They always consider what is in the child's best interest and sometimes weigh that against other considerations. As children get older, the level of participation in this process may change according to their own cognitive development and maturity level. In this article, we present a case of an adolescent with a life-limiting condition at the end of life. He wants to participate in his health management and speak for himself. He does not always prefer interventions that his parents think are best. Health care practitioners must include mature minors in the decision-making process and be willing to listen to their voices., Competing Interests: POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose., (Copyright © 2020 by the American Academy of Pediatrics.)

Background: Physical restraint is among the commonly used methods for ensuring patient safety in intensive care units. However, nurses usually experience ethical dilemmas over using physical restraint because they need to weigh patient autonomy against patient safety., Aim: The aim of this study was to explore factors behind ethical dilemmas for critical care nurses over using physical restraint for patients., Design: This is a qualitative study using conventional content analysis approach, as suggested by Graneheim and Lundman, to analyze the data., Methods: Seventeen critical care nurses were purposefully recruited from the four intensive care units in Tehran, Iran. Data were collected through in-depth semi-structured interviews and were concurrently analyzed through conventional content analysis as suggested by Graneheim and Lundman., Ethical Consideration: This study was approved by the Ethics Committee of Iran University of Medical Sciences, Tehran, Iran with the code: IR.IUMS.REC.1397.795. Before interviews, participants were provided with explanations about the aim of the study, the confidentiality of the data, their freedom to participate, and the right to withdraw the study, and their free access to the study findings. Finally, their consents were obtained, and interviews were started., Results: Factors behind ethical dilemmas for critical care nurses over using physical restraint were categorized into three main categories, namely the outcomes of using physical restraint, the outcomes of not using physical restraint, and emotional distress for nurses. The outcomes of using physical restraint were categorized into the three subcategories of ensuring patient safety, physical damage to patients, and mental damage to the patient. The outcomes of not using physical restraint fell into two subcategories, namely the risks associated with not using physical restraint and legal problems for nurses. Finally, the two subcategories of the emotional distress for nurses main category were nurses' negative feelings about restraint use and uncertainty over the decision on physical restraint use., Conclusion: Decision-making for restraint use is often associated with ethical dilemmas, because nurses need to weight the outcomes of its use against the outcomes of not using it and also consider patient safety and autonomy. Health authorities are recommended to develop clear evidence-based guidelines for restraint use and develop and implement educational and counseling programs for nurses on the principles of ethical nursing practice, patient rights, physical restraint guidelines and protocols, and management of emotional, ethical, and legal problems associated with physical restraint use.

Stroke is the second leading cause of death worldwide and a leading cause of adult disability worldwide. More than a third of individuals presenting with strokes are estimated to have a preexisting disability. Despite unprecedented advances in stroke research and clinical practice over the past decade, approaches to acute stroke care for persons with preexisting disability have received scant attention. Current standards of research and clinical practice are influenced by an underexplored range of biases that may hinder acute stroke care for persons with disability. These trends may exacerbate unequal health outcomes by rendering novel stroke therapies inaccessible to many persons with disabilities. Here, we explore the underpinnings and implications of biases involving persons with disability in stroke research and practice. Recent insights from bioethics, disability rights, and health law are explained and critically evaluated in the context of prevailing research and clinical practices. Allowing disability to drive decisions to withhold acute stroke interventions may perpetuate disparate health outcomes and undermine ethically resilient stroke care. Advocacy for inclusion of persons with disability in future stroke trials can improve equity in stroke care delivery., (© 2020 American Academy of Neurology.)

Background: Nurses providing 24-h care for the primary caregiver role have a number of significant roles to play in potential problems or conflicts associated with patient privacy and confidentiality., Research Objectives: The objective of the study is to determine the prevailing attitudes towards gossip and the patient privacy practices of nurses working in paediatric units., Research Design: A descriptive and cross-sectional design was used. A Descriptive Characteristics Form, a Gossip and Rumour Attitude Scale and a Patient Privacy Scale were used to collect data., Participants and Research Context: A total of 112 paediatric nurses working in Turkey were included in the study. The response rate was 79.43%., Ethical Considerations: Permission to conduct the study was obtained from the university's ethics committee. The participants were informed of the aim of the study, and voluntary participation, anonymous response and confidentiality were explained to them., Findings: It was observed that nurses who had a higher education level, who were educated about patient privacy and who had read the patient rights regulations were more concerned about patient privacy. Negative correlations were found between the attitudes towards gossiping and the average scores on the patient confidentiality scale. Nurses who negatively defined gossip were more concerned about patient confidentiality., Discussion: Privacy is important for securing and protecting the personal, physical and psychological things that are important and special for patients. It is argued that obstacles to maintaining the privacy of hospitalized children and adolescents are a tolerant attitude towards gossiping, a lack of education about patient privacy and insufficient information about patient's rights regulations and the Convention on the Rights of the Child., Conclusion: A nurse's knowledge about the provision of patient confidentiality affects their privacy practices. For this reason, regular training sessions are recommended in hospitals.

The claim that individuals legitimately differ with respect to their values seems to be uncontroversial among bioethicists, yet many bioethicists nevertheless oppose right-to-try laws. This seems to be due in part to a failure to recognize that such laws are intended primarily to be political, not legal, instruments. The right-to-try movement seeks to build political support for increasing access to newly developed drugs outside of clinical trials. Opponents of right-to-try laws claim that increasing access outside of clinical trials would undermine evidence-based medicine. They seek to maximize overall gains to patients by protecting them from adverse drug reactions and ensuring that drugs are more effective on average. In contrast, right-to-try activists have a point that regulatory judgments of drug safety and effectiveness impose one set of trade-offs on all individuals, regardless of their different values. That might be acceptable if determinations of safety and effectiveness were black and white, but that does not seem to be the case. This article argues that judgments of safety and effectiveness are in an important respect normative and reflect the perceived value of those ends relative to others. Such judgments, when universally imposed, harm patients who would readily make do with less knowledge of drug safety and effectiveness in exchange for more time and self-determination. The relevant moral principle is that of respect for individual autonomy. Just as that principle should lead one to substitute collective decisions for individual ones to regulate a natural monopoly, the same principle should lead one to substitute individual decisions for collective ones to avoid a government monopoly on access to newly developed drugs. It is argued that reforms should increase the number of treatment options available to patients outside of clinical trials. The final section of the article discusses ways in which current regulations might be reformed so as to provide more treatment options outside of clinical trials, without undermining evidence-based medicine., (© The Author(s) 2020. Published by Oxford University Press, on behalf of the Journal of Medicine and Philosophy Inc. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Modern biomedical and genetic studies require large study cohorts; blood donors have been suggested to represent an appropriate group for recruiting healthy cohorts. The Blood Service Biobank (BSB) in Finland was recently established to recruit blood donors willing to give broad biobank consent. The aim of the present study is to understand how the blood bank context influences views on donating samples and health data. We organised 61 interviews and 10 group discussions with current and potential blood donors. Using qualitative content analysis, we identified three discussion frameworks that summarise the results. We found that frequent blood donors associated the voluntary act of donation with caring for patients. The blood donation experience was considered to accommodate biobank participation, but also allowed critical observations on the integration of research data collection into blood donation. Research participants identified an important difference between the blood bank and biobank contexts. In the biobank context, the focus shifts from donating blood to patients into donating personal and genetic data for research use. Blood donors' anxiety over data use was balanced with their experience of the trustworthiness of the Blood Service. These experiences indicated that the new biobanking activity could be trusted to a familiar organisation. To build donors' trust, biobanks should invest in their institutional reputation, donor experience and dialogue with donors. These findings can be applied to other institutions that are considering setting up biobanks with broad consent for personal data use.

The use of freedom-depriving measures (physical and medicinal restraints) in people with cognitive impairment or dementia in clinical care settings is of ongoing importance. At the same time, these coercive measures are not only heavily debated but also in most cases ethically questionable from the perspective of the ethics of human dignity. Usually, the ethical evaluation of freedom-depriving measures follows classical paradigms of medical ethics, such as the Principles of Biomedical Ethics by Beauchamp and Childress. To enrich the debate at this point, the ethical category of embodiment ("Leiblichkeit" ) is introduced and discussed after a short summary of the ethical problem at hand. The phenomenon of the living body that has received increasingly more attention in several sciences since the proclaimed "corporeal turn" enables new perspectives towards human dignity, freedom and deprivation of freedom: freedom-depriving measures do not take place in an invisible realm of ideas but are directly applied to the psychophysical unity that is the living body of a person. Thus, freedom-depriving measures are an intervention into the bodily autonomy of the human being and the personal freedom that is manifested in the living body. The concept of the living body ("Leib") that is applied here, signifies more than just a physical object and is especially apt to capture the (inter)subjective dimension that has to be taken into account here. Finally, it will have to be investigated whether the use of medicinal restraints represents an especially serious interference into the sphere of human embodiment. Once introduced into the debate on freedom-depriving measures in clinical care, the category of embodiment can warrant decisive new emphases.

Improving how health care providers respond to medical injury requires an understanding of patients' experiences. Although many injured patients strongly desire to be heard, research rarely involves them. Institutional review boards worry about harming participants by asking them to revisit traumatic events, and hospital staff worry about provoking lawsuits. Institutions' reluctance to approve this type of research has slowed progress toward responses to injuries that are better able to meet patients' needs. In 2015-2016, we were able to surmount these challenges and interview 92 injured patients and families in the USA and New Zealand. This article explores whether the ethical and medico-legal concerns are, in fact, well-founded. Consistent with research about trauma-research-related distress, our participants' accounts indicate that the pervasive fears about retraumatization are unfounded. Our experience also suggests that because being heard is an important (but often unmet) need for injured patients, talking provides psychological benefits and may decrease rather than increase the impetus to sue. Our article makes recommendations to institutional review boards and researchers. The benefits to responsibly conducted research with injured patients outweigh the risks to participants and institutions., (© 2019 John Wiley & Sons Ltd.)

A 28-year-old woman suffered a traffic accident resulting in severe head injuries with deleterious prognosis. Diagnostics further revealed a hitherto unknown pregnancy, at suspected week 9. Based on the patient's wish to donate organs, brain death protocol confirmed irreversible loss of brain function. Yet, vital pregnancy rendered organ transplantation impossible. Multiple ethical and legal issues arose, from invalidation of established legal care after brain death to the delivery of a healthy child after trauma and long-term critical care. After medicolegal and ethical counselling, pregnancy was sustained, and the goal of organ donation postponed. Critical care focused on foetal homeostasis. At 30+4 weeks, a viable girl was born via assisted vaginal delivery. Postpartal organ donation resulted in heart, kidney and pancreas transplantation. The case emphasises the medical, legal and ethical challenges to combine two apparently diametrical goals: the successful full-term pregnancy and the fulfilment of a patient's wish to donate organs., Competing Interests: Competing interests: None declared., (© BMJ Publishing Group Limited 2019. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: Patients' values are everywhere and nowhere in nursing: frequently invoked and associated with effective nursing care but seldom explicitly defined or subject to dedicated analysis. Clarification of the concept of patients' values is pivotal because respecting and supporting patients' values are widely recognized as crucial for ethical nursing care. Despite this and the pervasive employment of the term patients' values in theories, approaches, and clinical guidelines, the concept remains ambiguous., Purpose: We sought to understand the key elements of the concept by investigating its use in theoretical and empirical literature., Method: This study used Rodgers' evolutionary concept analysis approach., Findings: We found that values are core individual beliefs that function in hierarchical systems; however, in the context of disease, the priority assigned to values by the individual may change. This is important, given that values play a foundational role in health-related decisions, such as in the context of chronic diseases., Discussion: Values are influenced by both individual intrinsic needs and the social context, but importantly, are involved in guiding decision-making. The attributes of the values may vary according to the context of the disease, the type of disease, and the decision at hand., (Copyright © 2019 Elsevier Inc. All rights reserved.)

Confidentiality is a central bioethical principle governing the provider-patient relationship. Dating back to Hippocrates, new laws have interpreted it for the age of precision medicine and electronic medical records. This is where the discussion of privacy and technology often ends in the scientific health literature when Internet-related technologies have made privacy a much more complex challenge with broad psychological and clinical implications. Beyond the recognised moral duty to protect patients' health information, clinicians should now advocate a basic right to privacy as a means to safeguard psychological health. The article reviews empirical research into the functions of privacy, the implications for psychological development and the resigned sentiment taking hold regarding the ability to control personal data. The article concludes with a call for legislative, educational and research steps to readjust the equilibrium between the individual and 'Big Data'., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2019. No commercial re-use. See rights and permissions. Published by BMJ.)

In 2003 Ruth Macklin published a short paper questioning the usefulness of the concept ″human dignity. ″ Since then the debate has been kept alive, although in the world of Law, ethics and clinical practice, this concept continues to be used normally. In the spotlight of that criticism was the bioethics of Leon Kass, built on the concept of dignity and sustained in a narrative methodology. In homage to Leon Kass, in this work I approach the concept of dignity from a literary perspective and focusing on nursing health care, in which the usefulness of the concept of human dignity is especially visible.

In Spain, the right to clinical information and informed consent as a practical expression of the principle of autonomy, are legal conquests achieved in the late twentieth century. From the law they have been transferred to the codes of medical deontology. The aim of this work is to study the pace of this transfer. Historical review of the different codes of medical deontology in Spain since the Civil War, seeking the presence of these ideas in them. Until code of medical deontology of 1979, the idea of clinical information did not appear in the contemporary deontological norm, and the rules on consent did so in very restricted cases. As of that date, their appearance is progressive in the successive codes. Currently, both concepts are fully developed in Spanish deontological regulations. Medical Deontology has take on the ideas of patient information and informed consent. This has been a long process which have brought considerable changes the deontological orientations of the traditional form of doctor-patient relationship. In these aspects, medical deontology has drifted, from emphasizing the prudence of the doctor, to emphasize the duty to inform and give ample space to the patient's decisions, which he recognizes as an autonomous and reflective moral agent, capable of taking his own decisions about your health.

Background: While there has been a trend for greater number of women to deliver at health facilities across Tanzania, mothers and their family members continue to face mistreatment with respectful maternity care during childbirth being violated. The objective of this study was to describe the experience of mothers and fathers in relation to (mis) treatment during childbirth in Tanzania., Methods: Using a qualitative descriptive design, 12 semi-structured interviews and four focus group discussions were held with mothers and fathers who were attending a postnatal clinic in the Lake Zone region of Tanzania. Mothers' age ranged from 20 to 45 years whereas fathers' age ranged from 25 to 60 years. Data were analyzed using a priori coding based on Bohren's et al. typology of the mistreatment of women during childbirth., Results: Mothers reported facing mistreatment and disrespectful maternity care through verbal abuse (harsh or rude language and judgmental or accusatory comments), failure to meet professional standards of care (refused pain relief, unconsented surgical operations, neglect, abandonment or long delays, and skilled attendant absent at time of delivery), poor rapport between women and providers (poor communication, lack of supportive care, denied husbands presence at birth, denied mobility, denied safe traditional practices, no respect for their preferred birth positions), and health system conditions and constraints (poor physical condition of facilities, supply constraints, bribery and extortion, unclear fee structures). Despite some poor care, some mothers also reported positive birthing experiences and respectful maternity care by having a skilled attendant assistance at delivery, having good communication from nurses, receiving supportive care from nurses and privacy during delivery., Conclusion: Despite the increasing number of deliveries occurring in the hospital, there continue to be challenges in providing respectful maternity care. Humanizing birth care in Tanzania continues to have a long way to go, however, there is evidence that changes are occurring as mothers notice and report positive changes in delivery care practices.

Competing Interests: None

Background: Despite early skepticism, the field of vascularized composite allotransplantation (VCA) has demonstrated feasibility. The ethics of VCA have moved past doubts about the morality of attempting such transplants to how to conduct them ethically., Methods: Leaders of each program performing and/or evaluating VCA in the United States were invited to participate in a working group to assess the state and future of VCA ethics and policy. Four meetings were held over the course of 1 year to describe key challenges and potential solutions., Results: Working group participants concluded that VCA holds great promise as treatment for patients with particular injuries or deficits, but the field faces unique challenges to adoption as standard of care, which can only be overcome by data sharing and standardization of evaluation and outcome metrics., Conclusions: Adequate attention must be given to concerns including managing the uniquely intense physician-patient relationship, ethical patient selection, ensuring patients have adequate representation, informing and earning the trust of the public for donation, standardizing metrics for success, and fostering an environment of data sharing. These steps are critical to transitioning VCA from research to standard of care and to its insurance coverage inclusion.

The nature of qualitative research is fundamentally different from quantitative research. In depth understanding and exploration of specific phenomena or their significance usually involve a data collection process with a select few participants with whom the researcher interacts over an extended period of time. The participants are not anonymous to the researcher and they also reveal personal information. Research participants' rights need to be protected, even more so in this type of qualitative work. This chapter discusses how ethical decision-making needs to be ongoing during the research process by applying the principles of respect for persons, beneficence and justice. Respecting research participants, involves addressing issues related to informed consent, anonymity and confidentiality while also reflecting on the researcher's impact on the participant and the research context while the research is carried out and also when the research is disseminated. The second principle of beneficence calls for the researcher to ascertain that participants' safety is given utmost importance. Finally, justice refers to ensuring that the burdens and benefits of research are shared fairly without any form of discrimination or manipulation. These principles offer the researcher flexible tools to reflect on ethical decisions as they arise throughout the research process., (Copyright © 2019 Elsevier B.V. All rights reserved.)

In resource-rich countries, 5-year survival rates for children with cancer approach 85%. This impressive statistic is largely the result of integrating research with clinical care. At the core of this endeavor are multiagent combination chemotherapy and supportive care agents (CASCA). Most CASCAs belong to the class of sterile injectable drugs, which make up the backbone of many proven and life-saving pediatric oncology regimens. There are few if any alternative agents available to treat most life-threatening childhood cancers. In the United States, shortages of CASCAs are now commonplace. The consequences of drug shortages are far reaching. Beyond the economic costs, these shortages directly affect patients' lives, and this is especially true for children with cancer. Drug shortages in general and shortages of CASCAs specifically result in increased medication errors, delayed administration of life-saving therapy, inferior outcomes, and patient deaths. One way to mitigate drug shortages is to adopt an essential medicines list and ensure that these medications remain in adequate supply at all times. We argue for creation of a CASCA-specific essential medicines list for childhood cancer and provide ethical and policy-based reasoning for this approach. We recognize that such a call has implications beyond pediatric cancer, in that children with other serious disease should have an equal claim to access to guaranteed evidence-based medicines. We provide these arguments as an example of what should be claimed for medical indications that are deemed essential to preserve life and function.