This book is a comprehensive and unique text and reference in medical ethics. By far the most inclusive set of primary documents and articles in the field ever published, it contains over 100 selections. Virtually all pieces appear in their entirety, and a significant number would be difficult to obtain elsewhere. The volume draws upon the literature of history, medicine, philosophical and religious ethics, economics, and sociology. A wide range of topics and issues are covered, such as law (...) and medicine, truth-telling by the physician, research, population policy, genetics, abortion, dying, and individual rights in medical care. The selections span the centuries, beginning with material from the works of Hippocrates, continuing through Thomas Percival, John Stuart Mill, and Claude Bernard, down to modern commentators like Henry K. Beecher, Walsh McDermott, David L. Bazelon, Paul Freund, H. L. A. Hart, John Rawls, Paul Ramsey, Richard McCormick, Rashi Fein, and Bernard Barber. The text has eight major divisions, beginning with sections on the ethical dimensions of the physician-patient relationship in history; the moral bases of medical ethics; and regulation, compulsion, and protection of the consumer in clinical medicine and public health. Each of these sections includes key essays that appear for the first time. All of the book's major divisions contain primary documents: codes such as the Hippocratic Oath, Medieval Law for the Regulation of Medicine, and the first as well as the most recent code of the American Medical Association; court decisions, including those on Karen Quinlan and on abortion in the United States and West Germany; government documents such as the statement of the National Commission on the Protection of Human Subjects, the Tuskegee Syphilis Report, the British Parliamentary debate on euthanasia, and the Council of Europe on rights of the sick and dying; and various published guidelines such as the Harvard Medical School brain death criteria, the American Hospital Association on patient's rights, and Pope Pius XII on the prolongation of life. Cases that illustrate moral dilemmas are provided for discussion purposes. Each section is preceded by a succinct editor's introduction. The documents and essays are of practical value for practitioners and students in medicine, law, ethics, and counselling, and for individual patients and groups concerned with medical care. Through encompassing divergent viewpoints, the essays and primary documents were selected to encourage humane practices and deepen understanding of the multiple traditions that shaped and do shape the development of medicine. (shrink)

The scarcity of resources during the COVID‐19 pandemic caused ethical dilemmas in prioritizing patients for treatment. Medical and ethical guidance only emphasizes clinical procedures but does not consider the sociocultural aspect. This study explored the perception of former COVID‐19 patients and their families on the decision‐making process of the patient's selection at a time of scarcity of resources. The result will inform the development of an ethical guide for allocating scarce resources that aligns with Indonesian culture. We conducted (...) qualitative research with in‐depth interviews between May ‐ December 2022 involving sixteen participants from various cities in Indonesia. We transcribed the interviews and analyzed the results using thematic analysis. This study found that doctor's decisions often differed from patient's expectations in allocating scarce resources, and therefore, it should be communicated appropriately. Medical decisions were not sufficiently made ethically, but must also be made communicatively. In Indonesia's strong communal culture, community involvement was essential to distributing limited resources. A better approach to ethical education, including adequate communication skills, is necessary to prepare health professionals for facing unpredictable future pandemics. (shrink)

In 2017, Partridge et al. published remarkable experimental results concerning the use of a new artificial womb technology (AWT) with lambs, developed at Children’s Hospital of Philadelphia, called...

It is widely acknowledged that the HIV and AIDS pandemic is a global emergency and that cheap, effective treatment should be provided for as many people as possible worldwide. But there are many challenges to rolling out antiretroviral treatment in resource-poor settings. These include the cost of drugs, sustaining their supply and distribution, the complexity of treatment regimens, selection of patients for treatment, shortage of medical and nursing personnel, inadequacy of healthcare facilities, the need for uninterrupted, lifelong treatment, and (...) monitoring for drug resistance. Great efforts, nationally and internationally, are required to meet these challenges. (shrink)

This paper discusses two interrelated concepts: (1) the ethics of planned social change and (2) primary health care. It takes the World Health Organization’s definition of primary health care as a point of departure to examine four identified potential areas where ethical dilemmas may occur. In addition, questions are raised about nursing education, as well as about the class and status differences between nurses and patients and communities. It takes the position that our first task is to encourage more (...) discussion and examination of ethical issues in the planned social change of primary health care. (shrink)

BackgroundThe overwhelming scarcity of organs within renal transplantation forces researchers and transplantation teams to seek new ways to increase efficacy. One of the possibilities is the use of personalized medicine, an approach based on quantifiable and scientific factors that determine the global immunological risk of rejection for each patient. Although this approach can improve the efficacy of transplantations, it also poses a number of ethical questions.MethodsThe qualitative research involved 22 semi-structured interviews with nephrologists involved in renal transplantation, with the (...) goal of determining the professionals' views about calculating the global immunological risk and the attendant ethical issues.ResultsThe results demonstrate a general acceptance of this approach amongst the participants in the study. Knowledge of each patient's immunological risk could improve treatment and the post-graft follow-up. On the other hand, the possibility that patients might be excluded from transplantation poses a significant ethical issue. This approach is not seen as something entirely new, given the fact that medicine is increasingly scientific and evidence-based. Although renal transplantation incorporates scientific data, these physicians believe that there should always be a place for clinical judgment and the physician-patient relationship.ConclusionsThe participants see the benefits of including the calculation of the global immunological risk within transplantation. Such data, being more precise and rigorous, could be of help in their clinical work. However, in spite of the use of such scientific data, a place must be retained for the clinical judgment that allows a physician to make decisions based on medical data, professional expertise and knowledge of the patient. To act in the best interests of the patient is key to whether the calculation of the global immunological risk is employed. (shrink)

Xenotransplant patient selection recommendations restrict clinical trial participation to seriously ill patients for whom alternative therapies are unavailable or who will likely die while waiting for an allotransplant. Despite a scholarly consensus that this is advisable, we propose to examine this restriction. We offer three lines of criticism: (1) The risk–benefit calculation may well be unfavorable for seriously ill patients and society; (2) the guidelines conflict with criteria for equitable patient selection; and (3) the selection (...) of seriously ill patients may compromise informed consent. We conclude by highlighting how the current guidance reveals a tension between the societal values of justice and beneficence. (shrink)

In 1999, Médecins Sans Frontières set out to explore and demonstrate the feasibility of preventing and treating HIV/AIDS in a so-called resource-poor, economically and socially disadvantaged setting. The first MSF mission to incorporate antiretroviral treatment into its HIV-AIDS-oriented medical program was undertaken in Bangkok. The second project was launched in Khayelitsha where MSF has been providing ARV treatment for persons with HIV/AIDS since May 2001. Khayelitsha is an enclave of some 500,000 inhabitants, most of whom live in corrugated-iron shacks, without (...) running water or electricity. Unemployment is extremely high; crime and violence are rampant. The general prevalence of HIV/AIDS is 26%, measured among pregnant women. The tuberculosis incidence rate is one of the world's highest for open-space sites. Unsurprisingly, TB/HIV coinfection is very high too: 63% of those with TB are also infected with HIV. (shrink)

Abstract:Facial transplantation is emerging as a therapeutic option for self-inflicted gunshot wounds. The self-inflicted nature of this injury raises questions about the appropriate role of self-harm in determining patient eligibility. Potential candidates for facial transplantation undergo extensive psychosocial screening. The presence of a self-inflicted gunshot wound warrants special attention to ensure that a patient is prepared to undergo a demanding procedure that poses significant risk, as well as stringent lifelong management. Herein, we explore the ethics of considering (...) mechanism of injury in the patient selection process, referring to the precedent set forth in solid organ transplantation. We also consider the available evidence regarding outcomes of individuals transplanted for self-inflicted mechanisms of injury in both solid organ and facial transplantation. We conclude that while the presence of a self-inflicted gunshot wound is significant in the overall evaluation of the candidate, it does not on its own warrant exclusion from consideration for a facial transplantation. (shrink)

In this article, I examine reproductive travel for sex selection with reference to two distinct technologies—MicroSort and preimplantation genetic diagnosis. Available since the 1990s for sex-linked disease avoidance, I focus here on their imbrication in an emerging global form of nonmedical, lifestyle sex selection that elicits movements of information, biomaterial, patients, providers, and equipment across borders. This web of cross-border, interclinical, and laboratory transactions raises issues highly relevant to a feminist approach to the bioethics of sex selection. (...) International documents, however, have yet to account for their implication in an increasingly stratified system of global sex selection practices. (shrink)

As the field of vascularized composite allotransplantation (VCA) continues to evolve and technological approaches improve, VCA programs must focus on promoting greater consistency in psychosocial assessment across programs to support the equitable selection of patients. Based on a summary of published reports of VCA, we address the ethical considerations raised by the present heterogeneity of approaches to psychosocial assessment, including weighing risks and benefits, informed consent and the role of decisional capacity, and potential or perceived bias in the assessment (...) process. We propose transparency of process across the field and encourage VCA programs to work collaboratively to share approaches to psychosocial assessment both pre- and posttransplant to promote health equity. (shrink)

Cardiopulmonary resuscitation is frequently performed on patients who, in retrospect, had a very low chance of survival. This is because all patients are ‘For cardiopulmonary resuscitation’ on admission to hospital by default, and delays occur before cardiopulmonary resuscitation can be ‘de-prescribed’. This article reviews the nature of potential harms caused by futile cardiopulmonary resuscitation, the reasons why de-prescription may be delayed, recent legal judgements relevant to timely do not attempt cardiopulmonary resuscitation decision making, and the possible detrimental effects of do (...) not attempt cardiopulmonary resuscitation discussions on end of life care. The moral and operational feasibility of a model in which informed consent must be obtained before cardiopulmonary resuscitation is attempted in some patient groups is then explored. (shrink)

Any program seeking to provide antiretroviral treatment to the many patients in need is bound to confront ethical dilemmas. Dilemmas, as we know, are situations in which decisionmakers are faced with a choice between equally unsatisfactory alternatives. Yet those in charge must make a decision or establish a policy that takes one pathway to the exclusion of another. Reasonable people may disagree over the choice, arguing that an alternative selection would have been ethically superior.

Professional control in the selection of treatment options for patients is changing. In light of social and legal developments emphasising patient choice and autonomy, and restricting medical paternalism and judicial deference, this article examines how far patients and families can demand NHS treatment in England and Wales. It considers situations where the patient is an adult with capacity, an adult lacking capacity and a child. In all three cases, there is judicial support for professional autonomy, but there (...) are also inconsistencies that have potential to elevate the importance of patient and family preferences. In combination, they may be perceived by healthcare professionals as an obligation to follow patient preferences, even where doing so conflicts with other professional obligations. It is argued that a more nuanced approach to shared decision-making could help clarify the boundaries of decision-making responsibility. (shrink)

Count Me In (CMI) was launched in 2015 as a patient-driven research initiative aimed at accelerating the study of cancer genomics through direct participant engagement, electronic consent and open-access data sharing. It is an example of a large-scale direct-to-patient (DTP) research project which has since enrolled thousands of individuals. Within the broad scope of ‘citizen science’, DTP genomics research is defined here as a specific form of ‘top-down’ research endeavour developed and overseen by institutions within the traditional human (...) subjects research context; in novel ways, it engages and recruits patients with defined diseases, consents them for medical information and biospecimens sharing, and stores and disseminates genomic information. Importantly, these projects simultaneously aim to empower participants in the research process while increasing sample size, particularly in rare disease states. Using CMI as a case study, this paper discusses how DTP genomics research raises new questions in the context of traditional human subjects research ethics, including issues surrounding participant selection, remote consent, privacy and return of results. It aims to demonstrate how current research ethics frameworks may be insufficient in this context, and that institutions, institutional review boards and investigators should be aware of these gaps and their role in ensuring the conduct of ethical, novel forms of research together with participants. Ultimately, a broader question is raised of whether the rhetoric of participatory genomics research advocates for an ethic of personal and social duty for contributing to the advancement of generalisable knowledge about health and disease. (shrink)

Battin et al examined data on deaths from physician-assisted suicide in Oregon and on PAS and voluntary euthanasia in The Netherlands. This paper reviews the methodology used in their examination and questions the conclusions drawn from it—namely, that there is for the most part ‘no evidence of heightened risk’ to vulnerable people from the legalisation of PAS or VE. This critique focuses on the evidence about PAS in Oregon. It suggests that vulnerability to PAS cannot be categorised simply by reference (...) to race, gender or other socioeconomic status and that the impetus to seek PAS derives from factors, including emotional state, reactions to loss, personality type and situation and possibly to PAS contagion, all factors that apply across the social spectrum. It also argues, on the basis of official reports from the Oregon Health Department on the working of the Oregon Death with Dignity Act since 2008, that, contrary to the conclusions drawn by Battin et al, the highest resort to PAS in Oregon is among the elderly and, on the basis of research published since Battin et al reported, that there is reason to believe that some terminally ill patients in Oregon are taking their own lives with lethal drugs supplied by doctors despite having had depression at the time when they were assessed and cleared for PAS. (shrink)

Is it ethical to pay patients for selecting cheaper medical treatments? The healthcare system in the United States is notoriously profligate, at least in part because when insurers foot the bill, patients have little incentive to avoid wasteful treatments. One familiar means for dealing with this problem is for insurers to offer reduced co-pays to patients who select cheaper treatments. Would it be ethical to take this one step further, beyond the zero bound, sharing the savings of cheaper treatments by (...) positively paying the patients who select them? Schmidt & Emanuel recently proposed this policy of ‘Inclusive Shared Savings’. This article examines various ethical objections to the idea. (shrink)

Introduction Tourette Syndrome is a childhood onset disorder characterized by vocal and motor tics and often remits spontaneously during adolescence. For treatment refractory patients, Deep Brain Stimulation may be considered. Methods and Results We discuss ethical problems encountered in two adolescent TS patients treated with DBS and systematically review the literature on the topic. Following surgery one patient experienced side effects without sufficient therapeutic effects and the stimulator was turned off. After a second series of behavioural treatment, he experienced (...) a tic reduction of more than 50%. The second patient went through a period of behavioural disturbances that interfered with optimal programming, but eventually experienced a 70% tic reduction. Sixteen DBS surgeries in adolescent TS patients have been reported, none of which pays attention to ethical aspects. Discussion Specific ethical issues arise in adolescent TS patients undergoing DBS relating both to clinical practice as well as to research. Attention should be paid to selecting patients fairly, thorough examination and weighing of risks and benefits, protecting the health of children and adolescents receiving DBS, special issues concerning patient’s autonomy, and the normative impact of quality of life. In research, registration of all TS cases in a central database covering a range of standardized information will facilitate further development of DBS for this indication. Conclusion Clinical practice should be accompanied by ongoing ethical reflection, preferably covering not only theoretical thought but providing also insights in the views and perspectives of those concerned, that is patients, family members and professionals. (shrink)

The author joins the discussion on selection of patients in the face of life-saving resources initiated in the Journal by Parsons and Lock, Mooney and the editorial in the December 1980 issue. In this article several selection systems are discussed. The author is in favour of a `criteria-system'. The criteria for such a system are elaborated. On the basis of a sequence of values a sequence of criteria is proposed. Attention is also given to the procedural aspects.

BackgroundBurn patients are among the most vulnerable groups of patients requiring principled ethical care. Caring for these patients often brings various ethical challenges for the members of the health care teams, especially nurses, which affect the clinical decisions made for these patients. A limited number of studies have addressed the ethical challenges of caring for burn patients for the responsible caregivers, so the present study attempted to identify these challenges. The present study aimed to explore the health professionals' experiences of (...) the ethical challenges during caring for burn patients.MethodsThis was a qualitative study with a descriptive, phenomenological design. 22 health professional practiced in public burn centers in Iran who met the inclusion criteria of the study were selected via purposeful sampling to participate in the study from June to August 2019. Data were collected using semi-structured, in-depth interviews with the individuals as well as field notes. Sampling was continued up to the data saturation. Thereafter, the collected data were analyzed using Colaizzi's method.ResultsThe findings of the study yielded 3 themes, including respect for the patient's privacy, respect for the patient's personal identity, and care challenges, as well as 9 categories.ConclusionThe findings of this study showed that the burn patients’ caregivers face some challenges in the domains of maintaining the patient's privacy, respecting the patient’s personal identity, and making the best clinical decision. Thus, providing the cultural, professional, and organizational requirements of meeting the challenges of caring for burn patients can consequently result in the caregivers’ inner peace and the improved performance. (shrink)

ABSTRACT Patient self‐management (SM) of chronic disease is an evolving movement, with some forms documented as yielding important outcomes. Potential benefits from proper preparation and maintenance of patient SM skills include quality care tailored to the patient's preferences and life goals, and increase in skills in problem solving, confidence and success, generalizable to other parts of the patient's life. Four central ethical issues can be identified: 1) insufficient patient/family access to preparation that will optimize their (...) competence to SM without harm to themselves, 2) lack of acknowledgement that an ethos of patient empowerment can mask transfer of responsibility beyond patient/family competency to handle that responsibility, 3) prevailing assumptions that preparation for SM cannot result in harm and that its main purpose is to deliver physician instructions, and 4) lack of standards for patient selection, which has the potential to exclude individuals who could benefit from learning to SM. Technology assessment offers one framework through which to examine available data about efficacy of patient SM and to answer the central question of what conditions must be put in place to optimize the benefits of SM while assuring that potential harms are controlled. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Nursing Ethics:A Selected Bibliography, 1987 to PresentDoris Mueller Goldstein (bio)The ethics of nursing is emerging as a discipline distinct from bioethics or medical ethics. Although these areas have many concerns in common, nurses are demonstrating that their perspective can make a unique contribution to ethical debate.An especially dynamic area of discussion within nursing ethics is the philosophy of caring. The work on moral development by (...) Harvard educator Carol Gilligan in her book, In a Different Voice, is pivotal in this discussion (IV B, Cooper 1989). Jean Watson, a nurse at the University of Colorado Center for Human Caring, also has written extensively on the philosophy of caring. She states that "an ethic of caring has a distinct moral position: caring is attending and relating to a person in such a way that the person is protected from being reduced to the moral status of objects...." (I, Watson 1988).Even as the philosophy of caring becomes more predominant, however, nurses today are often drawn away from the caring role by forces prevalent in the modern hospital. First, modern technology can divert the nurse's attention away from the patient and toward the operation of complex equipment, and second, large hospitals are often managed as bureaucracies (I, Fitzpatrick 1988).A recent study examined the frequency and seriousness of ethical issues encountered in nursing practice (IV A, Berger 1991). A survey instrument that included 32 potential ethical issues was developed by the authors. Respondents were asked to identify what kinds of issues concerned them and with what frequency, and to indicate what resources were used to cope with these dilemmas. The study found that nurses were frequently faced with inadequate staffing, heroic measures for prolonging life, inappropriate resource allocation, situations where patients are being discussed inappropriately, and coping with irresponsible activity of colleagues.The variety of ethical dilemmas encountered on a daily basis by nurses and their expressed interest in developing a moral grounding for the profession of [End Page 177] nursing, along with increased attention to ethical issues in nursing education have led to an explosion in the literature on these topics. In the preparation of this bibliography over 1,000 citations were retrieved in computer searches of various databases: BIOETHICSLINE, MEDLINE and CATLINE (National Library of Medicine), CINAHL (Current Index to Nursing and Allied Health Literature), BOOKS IN PRINT PLUS, and ETHX (the online public access catalog for articles at the National Reference Center for Bioethics Literature). What is offered here is a small sampling of that literature. Books and special issues of periodicals are briefly annotated, but citations to articles are simply arranged by broad subject, and within that, alphabetically by author. The subcategories reflect the topics receiving the most discussion in current literature.This bibliography updates "The Ethics of Nursing: A Selected Bibliography," by Doris Mueller Goldstein, which covered the earlier literature and was published as an appendix to Ethical Decision Making in Nursing Administration (I, Silva 1990).I. BooksAustralian Nursing Federation. Ethics: Nursing Perspectives, vol. 2. North Fitzroy, Victoria: The Federation, 1989. 102 p. (Publisher's address: 373-375 St. Georges Road, postal code 3068.) The National Professional Development Committee of Australia fostered the publication of a second volume of papers on nursing ethics. Articles cover patients' rights, ethical theory in decisionmaking behaviors, the nurse and the DNR order, and whistleblowing. Several appendices represent difficult-to-obtain documents, such as the RANF (Royal Australian Nursing Federation) position statements on terminal care, AIDS and occupational health, professional practice problems, and conscientious objection.Bandman, Elsie L., and Bandman, Bertram. Nursing Ethics Through the Life Span. 2nd ed. Norwalk, CT: Appleton & Lange, 1990. 288 p. Following an extensive review of the moral foundations of decision making in nursing, the authors take the reader through a chronology of nursing ethics issues as they occur in the human life span, beginning with the procreative family period and concluding with the end of life. Each chapter contains discussion questions—an aid to educators using this as a textbook.Benjamin, Martin, and Curtis, Joy. Ethics in Nursing. 2nd ed. New York: Oxford University Press, 1986. 206 p. An overview of the nature of ethical inquiry and theory is followed by... (shrink)

There is a great deal of support for the contention that the ethical cognition of health care professionals are of consequence to the level of patient care provided. The present study examines the ethical cognition of what has traditionally been deemed a profession of incomplete or marginal status: the retail, or community, pharmacy setting. An empirical examination of ethical cognition compares a systematic random sample of retail pharmacists with pharmacy students. Additional comparisons are made with a baseline of ethical (...) cognition abilities of other health care professionals, such as physicians and nurses.Based on cognitive-developmental theory and using a well-known measure of ethical reasoning, two hypotheses are explored regarding the ethical reasoning skills of retail pharmacy practitioners and pharmacy students. Results indicate that, contrary to cognitive moral development theory, students possess greater ethical reasoning skills than do their practitioner counterparts. In addition, baseline comparisons with other health professional groups reflect unfavorably on the retail pharmacists. It is suggested that the selection-socialization processes inherent in the retail pharmacy setting may result in one or more of the following outcomes: 1) the selection of lower ethical reasoners to the community pharmacy setting, 2) the exodus to other pharmacy settings of higher reasoners, and 3) a possible retrogression in the ethical cognition of community practitioners. Implications for retail practice and limitations are discussed. (shrink)

The national ethical guidelines relevant to assisted reproductive technology have recently been reviewed by the National Health and Medical Research Council. The review process paid particular attention to the issue of non-medical sex selection, although ultimately, the updated ethical guidelines maintain the pre-consultation position of a prohibition on non-medical sex selection. Whilst this recent review process provided a public forum for debate and discussion of this ethically contentious issue, the Victorian case of JS and LS v Patient (...) Review Panel [2011] VCAT 856 provides a rare instance where the prohibition on non-medical sex selection has been explored by a court or tribunal in Australia. This paper analyses the reasoning in that decision, focusing specifically on how the Victorian Civil and Administrative Tribunal applied the statutory framework relevant to ART and its comparison to other uses of embryo selection technologies. The Tribunal relied heavily upon the welfare-of-the-child principle under the Assisted Reproductive Treatment Act 2008. The Tribunal also compared non-medical sex selection with saviour sibling selection. Our analysis leads us to conclude that the Tribunal’s reasoning fails to adequately justify the denial of the applicants’ request to utilize ART services to select the sex of their prospective child. (shrink)

Background: Transgender individuals experience discrimination, stigmatization, and unethical and insensitive attitudes in healthcare settings. Therefore, healthcare professionals must be knowledgeable about the ways to deliver ethical and culturally competent care. Ethical considerations: No formal ethical approval was required. Aim: To synthesize the literature and identify gaps about approaches to the provision of ethical and culturally competent care to transgender populations. Design: A Scoping Review Literature Search: Literature was searched within CINAHL, Science Direct, PubMed, Google Scholar, EMBASE, and Scopus databases using (...) indexed keywords such as “transgender,” “gender non-conforming,” “ethically sensitive care,” and “culturally sensitive care.” In total, 30 articles, which included transgender patients and their families and nurses, doctors, and health professionals who provided care to transgender patients, were selected for review. Data were extracted and synthesized using tabular and narrative summaries and thematic synthesis. Findings: Of 30 articles, 23 were discussion papers, 5 research articles, and 1 each case study and an integrative review. This indicates an apparent dearth of literature about ethical and culturally sensitive care of transgender individuals. The review identified that healthcare professionals should educate themselves about sensitive issues, become more self-aware, put transgender individual in charge during care interactions, and adhere to the principles of advocacy, confidentiality, autonomy, respect, and disclosure. Conclusions: The review identified broad approaches for the provision of ethical and culturally competent care. The identified approaches could be used as the baseline, and further research is warranted to develop and assess organizational and individual-level approaches. (shrink)

BackgroundPrecision medicine development is driven by the possibilities of next generation sequencing, information technology and artificial intelligence and thus, raises a number of ethical questions. Empirical studies have investigated such issues from the perspectives of health care professionals, researchers and patients. We synthesize the results from these studies in this review.MethodsWe used a systematic strategy to search, screen and assess the literature for eligibility related to our research question. The initial search for empirical studies in five data bases provided 665 (...) different records and we selected 92 of these publications for inclusion in this review. Data were extracted in a spreadsheet and categorized into different topics representing the views on ethical issues in precision medicine.ResultsMany patients and professionals expect high benefits from precision medicine and have a positive attitude towards it. However, patients and professionals also perceive some risks. Commonly perceived risks include: lack of evidence for accuracy of tests and efficacy of treatments; limited knowledge of patients, which makes informed consent more difficult; possible unavailability of access to precision medicine for underprivileged people and ethnic minorities; misuse of data by insurance companies and employers, potential of racial stigmatization due to genetic information; unwanted communication of incidental findings; changes in doctor-patient-relationship through focusing on data; and the problem that patients could feel under pressure to optimize their health.ConclusionsNational legislation and guidelines already minimize many risks associated with precision medicine. However, from our perspective some problems require more attention. Should hopes for precision medicine’s benefits be fulfilled, then the ethical principle of justice would require an unlimited access to precision medicine for all people. The potential for autonomous patients’ decisions must be greatly enhanced by improvements in patient education. Harm from test results must be avoided in any case by the highest possible data security level and communication guidelines. Changes in the doctor-patient relationship and the impact of precision medicine on the quality of life should be further investigated. Additionally, the cost-effectiveness of precision medicine should be further examined, in order to avoid malinvestment. (shrink)

This pilot study had two purposes: (1) to review recent Japanese nursing literature on nursing advocacy; and (2) to obtain data from nurses on advocacy. For the second purpose, 24 nurses at a nursing college in Japan responded to a questionnaire. The concept of advocacy, taken from the West, has become an ethical ideal for Japanese nurses but one that they do not always understand, or, if they do, they find it difficult to fulfil. They cite nursing leadership support as (...) necessary to enacting this role. Discussion on the meaning of and the rationale for advocacy in a society where goodness or badness is relative to social situations and its impact may reveal two parallel but overlapping views of morality. Such a situation would not only influence notions of advocacy but also possibly render them more complex. (shrink)

This study aims to develop guidelines of key concepts and specific considerations to make the research more ethical when conducting neurological examinations and treatment interventions in mentally ill patients. We analyzed guideline development theory and literature, previous issues, and discussions with specialists of philosophy, medicine, sociology, and bioethics. The selection of research participants, drafting of intervention plans, and informed consent process were examined with reference to the dual burden; the minimal risk as a general rule of ethical allowance levels, (...) assent and dissent to assess the individual’s judgment capacity for consent, relational autonomy for personal consent with assistance by the proxy, and risk/benefit assessments. When conducting studies, this guideline requires that these three processes be set up appropriately on a case-by-case basis. (shrink)

Background:The concept of patient advocacy is still poorly understood and not clearly conceptualized. Therefore, there is a gap between the ideal of patient advocacy and the reality of practice. In order to increase nursing actions as a patient advocate, a comprehensive and clear definition of this concept is necessary.Research objective:This study aimed to offer a comprehensive and clear definition of patient advocacy.Research design:A total of 46 articles and 2 books published between 1850 and 2016 and related (...) to the concept of patient advocacy were selected from six databases and considered for concept analysis based on Rodgers’ evolutionary approach.Ethical considerations:This study was approved by the Research Ethics Committee of Tarbiat Modares University.Findings:The attributes of patient advocacy are safeguarding (track medical errors, and protecting patients from incompetency or misconduct of co-workers and other members of healthcare team), apprising (providing information about the patient’s diagnosis, treatment, and prognosis, suggesting alternatives of healthcare, and providing information about discharge program), valuing (maintaining self-control, enabling patients to make decisions freely, maintaining individualization and humanity, maintaining patient privacy, and acting in the patients’ values, culture, beliefs, and preferences), mediating (liaison between patients, families, and healthcare professionals, being patients’ voice, and communicate patient preferences and cultural values to members of the healthcare team), and championing social justice in the provision of healthcare (confronting inappropriate policies or rules in the healthcare system, identifying and correcting inequalities in delivery of health services, and facilitating access to community health services and health resources).Discussion and conclusion:The analysis of this concept can help to develop educational or managerial theories, design instruments for evaluating the performance of nurses in patient advocacy, develop strategies for enhancing patient advocacy, and improve the safety and quality of nursing care in the community and healthcare system. (shrink)

Background U.S. federal regulations require that certain ethical elements be followed to protect human research subjects. The location and clinical circumstances of a proposed research study can differ substantially and can have significant implications for these ethical considerations. Both the location and clinical circumstances are particularly relevant for research in intensive care units (ICUs), where patients are often unable to provide informed consent to participate in a proposed research intervention. Purpose Our goal is to elaborate on the updated 2013 U.S. (...) Food and Drug Administration (FDA) guidance document regarding an exemption from the requirement of obtaining informed consent from patients or their surrogates and to address certain elements within that document, thereby assisting clinicians in developing a framework for emergency research in accordance with the regulatory bodies at their own institutions and in the United States. Methods Review of the 2011 and updated FDA guidance document on exemption from informed consent. Results The current process of obtaining informed consent within ICUs needs to be revisited, especially for research in which timely informed consent is not likely. In particular, the process of obtaining informed consent may not be appropriate or even ethical for critically ill patients in extremis who require an intervention for which there is no current acceptable standard of care and clinical equipoise exists. We provide clinicians with a viewpoint that further elaborates on the FDA guidance document. Limitations The viewpoints provided herein are those of the authors and are therefore inherently limited by the personal views of a selected few. Other clinicians or researchers may not interpret the FDA guidelines in a similar manner. Moreover, the discussion of a guideline document is a limitation in and of itself. The guidelines set forth by the FDA are precisely that—guidelines. Therefore, they may not be followed as outlined in the guidance document within one’s own institution. Our goal is that, by elaborating on the guidelines for planned research involving human subjects in the ICU, institutional regulatory bodies may gain a better understanding in drafting their own document when faced with a clinician or a researcher who wishes to conduct planned research in an ICU. Conclusions We believe that the interpretations provided will allow clinicians to safely undertake planned research in ICUs without endangering the main tenets of ethical research involving human participants. This research is needed for the advancement of care in the critically ill. (shrink)

Main Response Topics ? Introduction ? Open display and public evaluation ? Publicity versus patient privacy ? Facial tissue donation ? Validity of Louisville Instrument for Risk Acceptance ? Patients' understanding of risk ? Face versus hand transplantation ? Rejection rates/risks ? Patient compliance ? Exit strategy ? Functional recovery ? Societietal implications ? Psychological implications ? Conclusion: Uncertainty likely to persist.

Machine‐learning algorithms have the potential to revolutionise diagnostic and prognostic tasks in health care, yet algorithmic performance levels can be materially worse for subgroups that have been underrepresented in algorithmic training data. Given this epistemic deficit, the inclusion of underrepresented groups in algorithmic processes can result in harm. Yet delaying the deployment of algorithmic systems until more equitable results can be achieved would avoidably and foreseeably lead to a significant number of unnecessary deaths in well‐represented populations. Faced with this dilemma (...) between equity and utility, we draw on two case studies involving breast cancer and melanoma to argue for the selective deployment of diagnostic and prognostic tools for some well‐represented groups, even if this results in the temporary exclusion of underrepresented patients from algorithmic approaches. We argue that this approach is justifiable when the inclusion of underrepresented patients would cause them to be harmed. While the context of historic injustice poses a considerable challenge for the ethical acceptability of selective algorithmic deployment strategies, we argue that, at least for the case studies addressed in this article, the issue of historic injustice is better addressed through nonalgorithmic measures, including being transparent with patients about the nature of the current epistemic deficits, providing additional services to algorithmically excluded populations, and through urgent commitments to gather additional algorithmic training data from excluded populations, paving the way for universal algorithmic deployment that is accurate for all patient groups. These commitments should be supported by regulation and, where necessary, government funding to ensure that any delays for excluded groups are kept to the minimum. We offer an ethical algorithm for algorithms—showing when to ethically delay, expedite, or selectively deploy algorithmic systems in healthcare settings. (shrink)

To ensure that the information resulting from research is relevant to patients, the Patient‐Centered Outcomes Research Institute eschews the “traditional health research” paradigm, in which investigators drive all aspects of research, in favor of one in which patients assume the role of research partner. If we accept the premise that patient engagement can offer fresh perspectives that shape research in valuable ways, then at least two important sets of questions present themselves. First, how are patients being engaged—and how (...) should they be engaged? Second, which patients are being engaged—and which patients should be? This set has received relatively less attention, and the neglect is surprising, given that the “who” question is conceptually prior to the question of “how.”This article focuses attention on the “who” of patient engagement in research. First, we provide background on the rationale for patient engagement, underscoring the importance of ensuring the representativeness of engaged patients. Second, we present what little is known about patients engaged in PCORI‐funded research. Third, we identify and discuss the ethical implications of ways in which current practices of patient identification and recruitment may lead to a lack of representativeness. These practices include reliance on the well‐connected and well‐informed, reliance on patients who are not well trained or well‐informed, and reliance on patient advocacy organizations. Finally, we consider several strategies for addressing these pitfalls in order to maximize the positive goals of patient engagement. Patient engagement is intended to address the inability of researchers, funders, and others to fully represent patient views and priorities, but without sufficient attention, the patients selected for this role may still leave important gaps. (shrink)

As innovations in the field of vascular composite allotransplantation (VCA) progress, whole-eye transplantation (WET) is poised to transition from non-human mammalian models to living human recipients. Present treatment options for vision loss are generally considered suboptimal, and attendant concerns ranging from aesthetics and prosthesis maintenance to social stigma may be mitigated by WET. Potential benefits to WET recipients may also include partial vision restoration, psychosocial benefits related to identity and social integration, improvements in physical comfort and function, and reduced surgical (...) risk associated with a biologic eye compared to a prosthesis. Perioperative and postoperative risks of WET are expected to be comparable to those of facial transplantation (FT), and may be similarly mitigated by immunosuppressive protocols, adequate psychosocial support, and a thorough selection process for both the recipient and donor. To minimize the risks associated with immunosuppressive medications, the first attempts in human recipients will likely be performed in conjunction with a FT. If first-in-human attempts at combined FT-WET prove successful and the biologic eye survives, this opens the door for further advancement in the field of vision restoration by means of a viable surgical option. This analysis integrates recent innovations in WET research with the existing discourse on the ethics of surgical innovation and offers preliminary guidance to VCA programs considering undertaking WET in human recipients. (shrink)

BackgroundThe principles of informed consent, confidentiality and privacy are often neglected during patient care in developing countries. We assessed the degree to which doctors in Lahore adhere to these principles during outpatient consultations.Material & MethodThe study was conducted at medical out-patient departments (OPDs) of two tertiary care hospitals (one public and one private hospital) of Lahore, selected using multi-stage sampling. 93 patients were selected from each hospital. Doctors' adherence to the principles of informed consent, privacy and confidentiality was (...) observed through client flow analysis performed by trained personnel. Overall patient perception was also assessed regarding these practices and was compared with the assessment made by our data collectors.ResultsSome degree of informed consent was obtained from only 9.7% patients in the public hospital and 47.8% in the private hospital. 81.4% of patients in the public hospital and 88.4% in the private hospital were accorded at least some degree of privacy. Complete informational confidentiality was maintained only in 10.8% and 35.5% of cases in public & private hospitals respectively. Informed consent and confidentiality were better practiced in the private compared to the public hospital (two-sample t-test > 2, p value < 0.05). There was marked disparity between the patients' perspective of these ethical practices and the assessment of our trained data collectors.ConclusionObservance of medical ethics is inadequate in hospitals of Lahore. Doctors should be imparted formal training in medical ethics and national legislation on medical ethics is needed. Patients should be made aware of their rights to medical ethics. (shrink)

Background Ethically, informed consent regarding randomised controlled trials (RCTs) should be understandable to patients. The patients can then give free consent or decline to participate in a RCT. Little is known about what patients really understand in consultations about RCTs. Methods Cancer patients who were asked to participate in a randomised trial were surveyed using a semi-standardised interview developed by the authors. The interview addresses understanding, satisfaction and needs of the patients. The sample included eight patients who participated in a (...) trial and two who declined. The data were analysed on the basis of Mayring's qualitative analysis. Results Patients' understanding of informed consent was less developed than anticipated, especially concerning key elements such as randomisation, content and procedure of RCTs. Analysing the result about satisfaction of the patients, most of the patients described their consultations as hectic and without advance notice. Health limitations due to cancer played a decisive role. However, most of the patients perceived their physician to be sympathetic. Analysing the needs of patients, they ask for a clear informed consent consultation with enough time and adequate advance notice. Conclusion This study fills an important empirical research gap of what is ethically demanded in an RCT consultation and what is really understood by patients. The qualitative approach enabled us to obtain new results about cancer patients' understanding of informed consent, to clarify patients' needs and to develop new ideas to optimise the informed consent. (shrink)

Background Equitable care is a fundamental value in the nursing profession. Healthcare workers have both a moral and professional duty to ensure that they do not discriminate. Aim This study aimed to explore how patients perceive equitable nursing care. Research design, participants, and research context This descriptive phenomenological qualitative research study used purposeful sampling to select 17 patients from various departments of a general hospital in southern Iran. The participants were then interviewed using a semi-structured in-depth interview format, which aimed (...) to delve into their experiences with equitable nursing care. The collected data were analyzed using Colaizzi's seven-step method and MAXQDA20 software. Ethical considerations Oral and written information about the study was provided before the participants gave their written consent. The transcribed interviews were de-identified. The study was approved by the Ethics Committee of Jiroft University of Medical Sciences. Findings The data analysis of the study identified three main themes and six subthemes that were related to the experiences of patients with equitable nursing care. The first theme, equitable care, encompassed subthemes such as nurses’ dedicated efforts to facilitate patient recovery and adherence to ethical behavior. The second theme, unconscious causes of inequitable nursing care, included subthemes such as unintentional discrimination stemming from organizational constraints and unconscious biases resulting from a lack of knowledge and skills. The third theme, discriminatory care, comprised subthemes such as deliberate discrimination based on personal traits and selective discrimination. Conclusion The study findings indicate that achieving equitable nursing care requires a multifaceted approach. This includes effective hospital management, organizational reforms, and regulatory enhancements. Additionally, it is crucial to pay close attention to the needs of patients, enhance nurses’ theoretical and practical skills in providing equitable care, fostering a culture of equality within healthcare settings, and consider the personality dimensions and moral characteristics of nurses. (shrink)

Background Informed consent is a process in which a healthcare provider obtains permission from an individual prior to surgery. Patient satisfaction with the informed consent process is one of the main indicators of healthcare service quality. This study aimed to assess patient satisfaction with surgical informed consent at Jimma Medical Center, Ethiopia, in 2020. Methods A facility-based cross-sectional study was conducted from April 1 to June 30, 2020, at Jimma Medical Center. Face-to-face interviews were conducted using structured questionnaires. (...) A systematic sampling technique was used to select the study participants. The collected data were coded, entered into Epi data version 3.1, and analyzed using SPSS version 25. Bivariate and multivariate regression analyses were performed to determine the association between patient satisfaction and socio-demographic and facility-related factors. In multivariate regression, predictors with a P-value of < 0.05 were considered statistically significant. Results Totally 372 study participants were interviewed with a response rate of 97.8%. Nearly two-fifths (43%) of patients were satisfied with surgical informed consent. Living in an urban area (AOR: 2.279, 95% CI 1.257–4.131), having current referred history (AOR: 1.856, 95% CI 1.033–3.337), consent form version (AOR: 2.076, 95% CI 1.143–3.773), time spent on the provision of informed consent (AOR: 5.227, 95% CI 2.499–10.936) and having better patient-health providers relationship (AOR: 5.419, 95% CI 3.103–9.464) predictors were positively associated with patient satisfaction. Conclusion Patient satisfaction with the surgical informed consent process was relatively low. Therefore, Health care professionals need to emphasize a way of delivering informed consent, patients' needs and obey a standard informed consent to improve patient satisfaction. (shrink)

This article discusses the rights of patients who are attending hospital for the most common laboratory examinations and who may also be taking part in research studies. A distinction is made between five kinds of rights to: protection of privacy, physical integrity, mental integrity, information and self-determination. The data were collected ( n = 204) by means of a structured questionnaire specifically developed for this study in the clinical chemistry, haematological, physiological and neurophysiological laboratories of one randomly selected university hospital (...) in Finland. The analysis of the data was statistical. On the whole, patients’ rights were realized reasonably well. This was most particularly the case with protection of privacy, as well as with the rights of physical and mental integrity. The rights to information and self-determination were less well realized. There are various steps that health care professionals and organizations can take to make sure that patients can enjoy their full rights, by counselling the patient, by giving opportunities to plan the examinations in advance, and by arranging a sufficient number of small examination rooms. (shrink)

In an era of ever-increasing dependence upon technology, physicians are losing the basic skills of patient examination and taking the medical history. This book describes the scenario in which the physician sits down with a patient to elicit a medical history. For example, how to greet a patient, how to discover the patient's chief concern, how to elicit symptoms, how to manage feelings as the patient and physician interact, and how to choose topics to explore, (...) and use the appropriate word selection, phrasing, and tone of voice. A good history leads to trust and rapport, and also to the determination of the best management of the patient's condition. Dr. William DeMeyer, a well-known physician and author of the major text on the neurologic exam, describes how to take a medical history, and also explains the reasons why it is done in a particular way. The author reviews the actual questions that a health provider should ask and the responses to a patient's answers. More importantly, the author describes how to listen to the patient's real needs as a person, rather than just a repository of symptoms. (shrink)

Formal teaching of ethics in health science programs at the entry level and postprofessional level in the United States and Canada has been documented in the professional literature for more than 30 years, yet there are significant differences in the way it is taught and how much time is devoted to the subject. Numerous teaching and evaluation methods have been used in ethics education, such as lectures, written examinations, debates, role-playing, small group discussion, and case study analysis. Most (...) instruction in ethics in the health sciences has been geared toward ethical analysis of case studies, that is, the student is asked to read a case or discuss a case with others, identify the ethical issues verbally or in writing, propose different resolutions supported by principles and theory, and select the best course of action. Yet, analysis of a case is an unlikely route to develop skills in coping with the uncertainty and emotional nature of ethical issues commonly encountered in clinical practice, nor does it give us an indication of what students would “really do” when they encounter an actual ethical problem. (shrink)

IntroductionInternational sharing of health data opens the door to the study of the so-called ‘Big Data’, which holds great promise for improving patient-centred care. Failure of recent data sharing initiatives indicates an urgent need to invest in societal trust in researchers and institutions. Key to an informed understanding of such a ‘social license’ is identifying the views patients and the public may hold with regard to data sharing for health research.MethodsWe performed a narrative review of the empirical evidence addressing (...) patients’ and public views and attitudes towards the use of health data for research purposes. The literature databases PubMed, Embase, Scopus and Google Scholar were searched in April 2019 to identify relevant publications. Patients’ and public attitudes were extracted from selected references and thematically categorised.ResultsTwenty-seven papers were included for review, including both qualitative and quantitative studies and systematic reviews. Results suggest widespread—though conditional—support among patients and the public for data sharing for health research. Despite the fact that participants recognise actual or potential benefits of data research, they expressed concerns about breaches of confidentiality and potential abuses of the data. Studies showed agreement on the following conditions: value, privacy, risk minimisation, data security, transparency, control, information, trust, responsibility and accountability.ConclusionsOur results indicate that a social license for data-intensive health research cannot simply be presumed. To strengthen the social license, identified conditions ought to be operationalised in a governance framework that incorporates the diverse patient and public values, needs and interests. (shrink)

Drug Safety Communications are used by the Food and Drug Administration to inform health care providers, patients, caregivers, and the general public about safety issues related to FDA-approved drugs. To assess patient knowledge of the messaging contained in DSCs related to the sleep aids zolpidem and eszopiclone, we conducted a large, cross-sectional patient survey of 1,982 commercially insured patients selected by stratified random sampling from the Optum Research Database who had filled at least two prescriptions for either zolpidem (...) or eszopiclone between July 1, 2012 and June 30, 2013. Among the 594 respondents, two-thirds reported hearing generally about drug safety information prior to starting a new drug, with the remaining one-third “rarely” or “never” hearing such information. Providers and pharmacists were primary sources of drug safety information. Two-thirds of zolpidem users and half of eszopiclone users reported having heard about the related DSC messages, ability to accurately identify the major factual messages was limited. Respondents reacted to new drug safety information about their sleep aids by reporting that they would want to learn about alternative ways to help them sleep and seek out more information about the safety of their specific sleeping pill. Opportunities may exist for the FDA to work with providers and pharmacies to help ensure the DSC information is more widely received and is more fully understood by those taking the affected medications. (shrink)

This study – the first to explore how infertility providers confront several critical dilemmas concerning sex selection of embryos for nonmedical, social reasons – highlights key challenges and questions. Clinicians struggle, for instance, with how to define “family balalancing”, when to offer it, and how to decide.