BackgroundFor a long time, in sports, researchers have tried to understand an expert by comparing them with novices, raising the doubts if the visual search characteristics distinguish experts from novices. Therefore, the aim of the present study was to review and conduct a meta-analysis to evaluate the differences in visual search behavior between experts and novices in team sports athletes.MethodsThis systematic review with meta-analysis followed the PRISMA 2020 and Cochrane's guidelines. Healthy team athletes were included, which engaged in regular practice, (...) from any sex or competitive level, specifically classified a priori as expert or novice in the original research. We considered only research published in peer-reviewed journals, with no limitations regarding date or language. It was considered healthy team sport athletes engaged in regular practice. The scenarios could be in situ or film-based. The databases of EBSCO, PubMed, Scopus, SPORTDiscus, and Web of Science were used to perform the searches. The risk of bias was calculated through the RoBANS tool.ResultsFrom a total of 6,257 records, of which 985 were duplicates, titles and abstracts of 5,272 were screened, and 45 required full-text analysis. Of those, 23 were excluded due to not fulfilling the eligibility criteria regarding participants. In the end, 22 studies were selected, however, as two studies were part of the same trial and were analyzed conjointly.DiscussionExperts showed to be older and with more years of practice. The ability to distinguish experts from novices was not so clear regarding the variables analyzed. This could be due to the strategies chosen in each study, which were specific to each scenario, and when grouping all together, it was lost information within non-representative averages. The distinction between experts and novices was not clear, showing a lot of heterogeneity in the included studies. The expert classification itself may have been the conditioning aspect for these results, retaining the doubt and the need for more studies in the field.Systematic review registrationThe protocol was pre-registered in OSF. (shrink)

Background: Mental fatigue can impact physical demands and tactical behavior in sport-related contexts. Small-sided games are often used to develop a specific sport-related context. However, the effects of mental fatigue on physical demands and tactical behaviors during soccer SSGs have not been aggregated for systematical assessment.Objective: This systematic review was conducted to compare the effects of mental fatigue vs. control conditions in terms of the total running distance and tactical behavior of soccer players during SSGs.Methods: The data sources utilized were (...) PubMed, PsycINFO, Scielo, Scopus, SPORTDiscus, and Web of Science. The study eligibility criteria were established based on PICOS: Population: healthy youth and young adult men soccer players with regular training practice and belonging to teams with regular competitions; Intervention: exposed to mental fatigue-induced protocols only before SSGs; Comparator: control conditions before SSGs; Outcomes: physical demands and tactical behavior ; Study design: counterbalanced cross-over design; and only full-text and original articles written in English.Results: The database search initially identified 111 titles. From those, six articles were eligible for the systematic review and meta-analysis. Results showed no significant effect of fatigue on total running distance and tactical behavior.Conclusions: A non-significant effect of mental fatigue on total running distance and tactical behaviors performed by soccer players during SSGs was found in this systematic review. (shrink)

BackgroundThe use of dedicated training programs for improving decision-making (DM) in team sports players has grown in the last several years. Approaches such as imagery training, video-based training, or game-based drills are some of the interventions used in youth players in order to improve DM. However, no systematic reviews or meta-analyses have been conducted to summarize the main evidence regarding the effects of these programs on the players and identify the magnitude of the effects compared to control groups.ObjectiveThis systematic review (...) (with meta-analysis) was conducted to assess the effects of training programs on the DM of youth team sports players.Data SourcesThe data sources utilized were PubMed, PsycINFO, Scopus, SPORTDiscus, and Web of Science.Study eligibility criteriaThe criteria included the following: (i) youth (≤ 18 years old) team sports players with no restriction on sex or competitive level; (ii) players subjected to training programs to develop DM; (iii) control groups; (iv) pre–post outcomes related to tactical behavior, technical execution, reaction, and decision time; and (v) controlled trials.ResultsThe database search initially identified 2497 titles. From these, six articles were eligible for the systematic review and meta-analysis. The results showed a significant beneficial effect of DM interventions on tactical behavior (ES = 1.12;p= 0.035;I2= 80.0%; Egger’s testp= 0.066), whereas no significant effect of DM interventions on technical execution was found (ES = 0.74;p= 0.180;I2= 69.1%; Egger’s testp= 0.873).ConclusionThe DM interventions were significantly effective in improving tactical behavior in youth team sports players independently from the number of sessions to which players were exposed. In addition, DM interventions were significantly effective in improving technical execution. However, the results should be carefully interpreted due to the heterogeneity of the articles’ overall methodological quality. Future DM interventions should consider using combined approaches that allow players to develop both tactical behavior and technical execution. (shrink)

The language of ethics expertise has become particularly important in bioethics in light of efforts to establish the value of the clinical ethics consultation, to specify who is qualified to function as a clinical ethics consultant, and to characterize how one should evaluate whether or not a person is so qualified. Supporters and skeptics about the possibility of ethics expertise use the language of ethics expertise in ways that reflect competing views about what ethics expertise entails. We argue for clarity (...) in understanding the nature of expertise and ethics expertise. To be an ethics expert, we argue, is to be an expert in knowing what ought to be done. Any attempt to articulate expertise with respect to knowing what ought to be done must include an account of ethics that specifies the nature of moral truth and the means by which we access this truth or a theoretical account of ethics such that expertise in another domain is linked to knowing or being better at judging what ought to be done and the standards by which this “knowing” or “being better at judging” is determined. We conclude with a discussion of the implications of our analysis for the literature on ethics expertise in CEC. We do think that there are clear domains in which a clinical ethics consultant might be expert but we are skeptical about the possibility that this includes ethics expertise. Clinical ethics consultants should not be referred to as ethics experts. (shrink)

The nature, possibility, and implications of ethics expertise in general and of bioethics expertise in particular has been the focus of extensive debate for over thirty years. What is ethics expertise and what does it enable experts to do? Knowing what ethics expertise is can help answer another important question: What, if anything, makes a claim of expertise legitimate? In other words, how does someone earn the appellation “ethics expert?” There remains deep disagreement on whether ethics expertise is possible, and (...) if so, what constitutes such expertise and what it entails and legitimates. Discussion of bioethics expertise has become particularly important given the growing presence of bioethicists in the clinical setting as well as efforts to professionalize bioethics through codes of ethics and certification efforts. Unlike in the law or in engineering, where there may be a body of knowledge that professional organizations or others have articulated as important for education and training of experts, ethics expertise admits of no such body of knowledge or required experience. Nor is there an entity seen as having the authority to articulate the necessary scope of knowledge. Questions about whether there is such a body of knowledge for particular areas within bioethics have emerged and played a central role in professionalization efforts in recent years, especially in the area of clinical ethics. (shrink)

I argue that valid informed consent is ethically required for organ donation from individuals declared dead using neurological criteria. Current policies in the U.S. do not require this and, not surprisingly, current practices inhibit the possibility of informed consent. Relevant information is withheld, opportunities to ensure understanding and appreciation are extremely limited, and the ability to make and communicate a free and voluntary decision is hindered by incomplete disclosure and other practices. Current practices should be revised to facilitate valid informed (...) consent for organ donation. (shrink)

Decisions regarding clinical procedures or research participation typically require the informed consent of individuals. When individuals are unable to give consent, the informed permission of a legally authorized representative or surrogate is required. Although many proposed procedures are aimed primarily at benefiting the individual, some are not. I argue that, particularly when individuals are asked to assume risks primarily or exclusively for the benefit of others, family members ought to be engaged in the informed consent process. Examples of procedures in (...) which individuals are asked to assume risks primarily or exclusively for the benefit of others include living organ donation and research participation. (shrink)

Within and among societies, there are competing understandings of the status of children, including debates over whether they can bear rights and, if so, which rights they bear and against whom, and their capacity to make decisions and be held responsible and accountable for actions. There also are different understandings of what constitutes a family; what authority parents have over and regarding their children; and what should happen to children who are without parents because of death, desertion, or imprisonment. These (...) and other related debates reflect deep differences in worldviews, in how one understands the legitimate role of the state, in how one comes to know the proper way to raise children, and so on. The United Nations Convention on the Rights of the Child purports to reflect international convergence on the rights of children, on how decisions concerning children should be made, and on how children ought to be treated by the state and by their parents. This paper examines whether the Convention's framework for decision making concerning children is an appropriate framework for pediatric bioethics. Questions about how to make health care decisions for children ultimately are questions of who is in authority to make and judge such decisions. Establishing who is in authority, determining whether there are any limits to that authority and, if so, defining those limits should be the focus of efforts to develop and implement a pediatric decision-making framework. (shrink)

Socio-cultural shifts during the 1960s and 1970s included widespread secularization, challenges to authority and tradition, and an emphasis on individual choice. Healthcare and biomedical research advances accompanied these social changes, giving rise to numerous ethical and policy questions. The contemporary bioethics project emerged in this context with (at least) three aims: (1) to offer practical answers to these questions (often) in ways that (2) facilitate or support particular practices or goals (e.g., organ donation or human research) and that (3) appear (...) broadly applicable and legitimately enforceable. Philosophical thinking, which involves investigating and disambiguating concepts and categories, articulating conceptually clear definitions, and mapping arguments to identify premises, detect fallacies, and describe their logical implications, can undermine the practical goals of the bioethics project. This tension between the goals of bioethics and philosophical thinking might help to explain what some scholars see as a disinterest in philosophical thinking in bioethics today. (shrink)

The 20th century eugenics movement in the USA and contemporary practices involving prenatal screening (PNS), prenatal diagnosis (PND), abortion and preimplantation genetic diagnosis (PGD) share important morally relevant similarities. I summarise some features of the 20th century eugenics movement; describe the contemporary standard of care in the USA regarding PNS, PND, abortion and PGD; and demonstrate that the ‘old eugenics’ the contemporary standard of care share the underlying view that social resources should be invested to prevent the birth of people (...) with certain characteristics. This comparison makes evident the difficulty of crafting moral arguments that treat some uses of PNS, PND, abortion and PGD as licit and others as illicit. (shrink)

Recent work calls for excluding clinical ethics consultants’ religious ethical commitments from formulating recommendations about particular cases and communicating those recommendations. I demonstrate that three arguments that call for excluding religious ethical commitments from this work logically imply that consultants may not use their secular ethical commitments in their work. The call to sever clinical ethics consultation from the ethical commitments of clinical ethics consultants has implications for the scope of work consultants may do and for the competencies required for (...) such work. (shrink)

In most, if not all, jurisdictions with active organ transplantation programs, there is a persistent desire to increase donation rates because the demand for transplantable organs exceeds the supply. China, in particular, faces an extraordinary gap between the number of organs donated by deceased donors and the number of people seeking one or more transplants. China might look to Western countries with higher donation rates to determine how best to introduce Western practices into the Chinese system. In attempting to increase (...) its organ donation rate, China must not only ensure that its organ donation system reflects different Chinese cultural values, but also that it avoids the ethical problems of the United States and of other Western systems. This article examines four such problems. They concern the family, obtaining permission for organ donation, the definition and diagnosis of “brain death,” and trust. Revisions to the Chinese system should involve a careful look to China and Chinese cultural resources rather than to Western models. (shrink)

The term ‘culture wars’ has been used to describe deep, apparently intractable, disagreements between groups for many years. In contemporary discourse, it refers to disputes regarding significant moral matters carried out in the public square and for which there appears to be no way to achieve consensus or compromise. One set of battle lines is drawn between those who hold traditional Christian commitments and those who do not. Christian bioethics is nested in a set of moral and metaphysical understandings that (...) collide with those of the dominant secular culture. The result is a gulf between a moral life and an approach to bioethics framed in the face of a transcendent God and a final judgment versus a moral life and an approach to bioethics framed as if the world were without ultimate meaning and as if death were the end of personal existence. These approaches are separated by a moral and metaphysical gulf that sustains incompatible life worlds and incompatible understandings of bioethics. Attempts to bridge the gulf with secular reason are ineffective because there is no shared conception of reason or standard of evidence. Efforts to use the state to enforce a particular set of metaphysical and moral commitments, whether secular or religious, lead to public disputes with a war-like character. (shrink)

Contemporary bioethics is, at least in part, the product of biomedical and sociopolitical changes in the middle to latter part of the 20th century. These changes prompted reflection on deep moral questions at a time when traditional sources of moral guidance no longer were widely respected and, in some cases, were being rejected. In light of this, scholars, policy makers, and clinicians sought to identify a common morality that could be used among persons with different moral commitments to resolve disputes (...) and guide clinical practice and health policy. The concept of the common morality remains important in bioethics. This essay considers the common morality in light of the work of H. Tristram Engelhardt, Jr. (shrink)

This handbook is currently in development, with individual articles publishing online in advance of print publication. At this time, we cannot add information about unpublished articles in this handbook, however the table of contents will continue to grow as additional articles pass through the review process and are added to the site. Please note that the online publication date for this handbook is the date that the first article in the title was published online. For more information, please read the (...) site FAQs. (shrink)

Roman Catholic healthcare institutions in the United States face a number of threats to the integrity of their missions, including the increasing religious and moral pluralism of society and the financial crisis many organizations face. These organizations in the United States often have fought fervently to avoid being obligated to provide interventions they deem intrinsically immoral, such as abortion. Such institutions no doubt have made numerous accommodations and changes in how they operate in response to the growing pluralism of our (...) society, but they have resisted crossing certain lines and providing particular interventions deemed objectively wrong. Catholic hospitals in Belgium have responded differently to pluralism. In response to a growing diversity of moral views and to the Belgian Act of Euthanasia of 2002, Catholic hospitals in Belgium now engage in euthanasia. This essay examines a defense that has been offered of this practice of euthanasia in Catholic hospitals and argues that it is misguided. (shrink)

The bioethics literature has paid little attention to matters of informed reproductive decision-making among women of childbearing age who have chronic kidney disease (CKD), including women who are on dialysis or women who have had a kidney transplant. Women with CKD receive inconsistent and, sometimes, inadequate reproductive counseling, particularly with respect to information about pursuing pregnancy. We identify four factors that might contribute to inadequate and inconsistent reproductive counseling. We argue that women with CKD should receive comprehensive reproductive counseling, including (...) information about the possibility of pursuing pregnancy, and that more rigorous research on pregnancy in women with CKD, including women on dialysis or who have received a kidney transplant, is warranted to improve informed reproductive decision making in this population. (shrink)

Introduction The bioethics literature reflects significant interest in and concern with the use of genetic and genomic information in various settings. Because psychiatric treatment and research raises unique ethical, legal, and social issues, we conducted a scoping review of the biomedical, bioethics, and psychology literature regarding the application of genetic and genomic tools to psychiatric disorders (as listed in the DSM-5) and two associated behaviors or symptoms to provide a more detailed overview of the state of the field. Objectives The (...) primary objective was to examine the available bioethics, biomedical, and psychology literature on applying genetic and genomic tools to psychiatric disorders (other than neurodevelopmental disorders) and two behaviors or symptoms sometimes associated with them (aggression or violence and suicidality) to identify the disorders to which these tools have been applied, the contexts in or purposes for which they have been applied, the ethical, legal, or social concerns associated with those uses, and proposed recommendations for mitigating those concerns. Methods We used Arksey and O’Malley’s scoping review framework: (1) identify the research question; (2) identify relevant studies; (3) select studies; (4) chart the data; and (5) collate, summarize, and report results (2005). We relied on Levac et al. to inform our application of the framework (2010). The PRISMA extension for scoping reviews checklist informed our reporting (2018). We searched three electronic databases MEDLINE (PubMed), Embase, and PsycInfo (EbscoHost) for peer-reviewed journal articles in English to identify relevant literature. One author screened the initial results and additional screening was done in consultation with other authors. A data extraction form using DSM-5 diagnostic categories (excluding neurodevelopmental disorders) was developed and two authors independently each reviewed approximately half of the articles. Inter-rater reliability was ensured by double-coding approximately 10% of the papers. An additional author independently coded 10% of the articles to audit the data. Results In 365 coded publications, we identified 15 DSM-5 diagnostic categories in addition to the two pre-selected behaviors or symptoms (aggression or violence and suicidality) to which genetic or genomic tools have been applied. We identified 11 settings in or purposes for which these tools were applied. Twenty-two types of ethical, legal, or social concerns associated with the application of genetic or genomic tools to these disorders or behaviors/symptoms were identified along with 13 practices or policies that could mitigate these concerns. Conclusion Genetic and genomic tools have been applied to a wide range of psychiatric disorders. These raise a range of ethical, legal, and social concerns. Additional research is warranted to better understand the concerns and effective ways to address them. Advancing the literature to identify relevant ethical, legal, or social concerns and solutions to those problems likely requires greater attention to specific applications of genetic or genomic tools to particular psychiatric disorders and associated behaviors/symptoms as well as broad stakeholder engagement. (shrink)

An Institute of Medicine panel charged with reviewing the system for overseeing research involving children concluded in 2004 that Institutional Review Boards, institutions engaged in research, and study sponsors should “adopt explicit written policies on acceptable and unacceptable types and amounts of payments related to [children’s] research participation.” We previously reported data on practices and policies in the U.S. regarding payments to children who participate in research and their parents. Here, we report additional results from our study and identify some (...) of the decisions that must be made in developing payment plans and on which payment policies will be expected to offer guidance. We conclude that further conceptual analysis and empirical research are necessary before IRBs, institutions, and sponsors can develop specific rules on numerous aspects of payment. Nevertheless, payment policies that promote the ethical treatment of children in research and their parents can be developed. We propose a structure for such policies. (shrink)

Much of the human research conducted in the United States or by U.S. researchers is regulated by the Common Rule. The Common Rule reflects the decision of 17 federal agencies, including the Department of Health and Human Services, to require that investigators follow the same rules for conducting human research., though there is significant overlap with the Common Rule.) Many of the obligations delineated in the Common Rule can be traced back to the work of the National Commission for the (...) Protection of Human Subjects of Biomedical and Behavioral Research. The National Commission was appointed in 1974 as part of the National Research Act in response to revelations about serious abuses involving human subjects, most notably the Tuskegee/United States Public Health Service Syphilis Study. (shrink)

What the Doctor Didn’t Say, by Jerry Menikoff and Edward P. Richards, is a courageous and well-written volume that examines some of the fundamental debates pertaining to the ethics of clinical research. The volume deserves a careful reading by anyone with a potential role in clinical research: clinicians who might serve as investigators or refer patients to clinical trials; research staff; Institutional Review Board members and administrators; sponsors who design clinical trials; and the book’s intended audience, namely, potential research participants (...) and their families. A cursory reading of this volume might lead one to think that Menikoff and Richards have declared war on clinical research. They have not. Instead, they offer an in-depth study of the conduct and oversight of clinical research through the lens of law and ethics. They shed light on old issues and initiate discussion of new questions, challenging readers to think critically about the relationship between medical ethics, research ethics, the law, and the conduct of clinical research. (shrink)

What the Doctor Didn’t Say, by Jerry Menikoff and Edward P. Richards, is a courageous and well-written volume that examines some of the fundamental debates pertaining to the ethics of clinical research. The volume deserves a careful reading by anyone with a potential role in clinical research: clinicians who might serve as investigators or refer patients to clinical trials; research staff; Institutional Review Board members and administrators; sponsors who design clinical trials; and the book’s intended audience, namely, potential research participants (...) and their families. A cursory reading of this volume might lead one to think that Menikoff and Richards have declared war on clinical research. They have not. Instead, they offer an in-depth study of the conduct and oversight of clinical research through the lens of law and ethics. They shed light on old issues and initiate discussion of new questions, challenging readers to think critically about the relationship between medical ethics, research ethics, the law, and the conduct of clinical research. (shrink)

On Monday, June 25, 2018, H. Tristram Engelhardt, Jr., PhD, MD, co-founder of The Journal of Medicine and Philosophy, was laid to rest in the beautiful Hill Country of Texas near Comal County. Professor Engelhardt co-founded The Journal of Medicine and Philosophy in 1976 with Dr. Edmund Pellegrino. Engelhardt first served as Associate Editor, and then Editor and Senior Editor from 1976 until 2018. The Journal thrived for more than four decades through his energy, vision, and dedication. One of the (...) intellectual founders of the fields that would become known as bioethics and the philosophy of medicine, Engelhardt’s seminal scholarship has framed the philosophical debates surrounding healthcare policy and medical practice throughout the world. The Journal of Medicine and Philosophy mourns his passing. (shrink)

Hastings Center Report, Volume 52, Issue 2, Page 3-3, March‐April 2022.

Volume 20, Issue 2, February 2020, Page 27-30.

The bioethics literature has paid little attention to matters of informed reproductive decision-making among women of childbearing age who have chronic kidney disease (CKD), including women who are on dialysis or women who have had a kidney transplant. Women with CKD receive inconsistent and, sometimes, inadequate reproductive counseling, particularly with respect to information about pursuing pregnancy. We identify four factors that might contribute to inadequate and inconsistent reproductive counseling. We argue that women with CKD should receive comprehensive reproductive counseling, including (...) information about the possibility of pursuing pregnancy, and that more rigorous research on pregnancy in women with CKD, including women on dialysis or who have received a kidney transplant, is warranted to improve informed reproductive decision making in this population. (shrink)

This essay examines conceptual difficulties with one of the ways in which justice has been understood and applied the ethical and regulatory review of human research. Justice requires the fair distribution of the benefits and burdens of research. Class membership is seen as justifying inclusion in higher hazard-no benefit research from which members of potentially vulnerable classes, such as children, typically would be excluded. I argue that class membership does not do the justificatory work it is thought to do and (...) that the use of class membership to justify inclusion in higher hazard-no benefit research leads to unjustified discrimination of sick children and offers special protections to healthy children. (shrink)

Bibliography of the works of Yaśovijaya, 1624-1688, Jaina philosopher.

In the absence of centralized human rights leadership in an increasingly fragmented global health policy landscape, regional health offices have stepped forward to advance the rights-based approach to health. Reviewing the efforts of the Pan American Health Organization, this article explores the evolution of human rights in PAHO policy, assesses efforts to mainstream human rights in the Pan American Sanitary Bureau, and analyzes the future of the rights-based approach through regional health governance, providing lessons for other regional health offices and (...) global health institutions. This article explores PAHO's 15-year effort to mainstream human rights through PASB technical units, national capacity-building, the Inter-American human rights system, and the PAHO Directing Council. Through documentary analysis of PAHO policies and semi-structured interviews with key PASB stakeholders, the authors analyze the understandings and actions of policymakers and technical officers in implementing human rights through PAHO governance. Analyzing the themes arising from this narrative, the authors examine the structural role of secretariat leadership, state support, legal expertise, and technical unit commitment in facilitating a rights-based approach to the health in the Americas. Human rights are increasingly framing PAHO efforts, and this analysis of the structures underlying PAHO's approach provides an understanding of the institutional determinants of the rights-based approach to health, highlighting generalizable themes for the mainstreaming of human rights through regional health governance. With this regional-level understanding of health governance, future national-level research can begin to understand the causal forces linking regional human rights work with national policy reforms and public health outcomes. (shrink)

The popularity and availability of global health experiences has increased, with organizations helping groups plan service trips and companies specializing in “voluntourism,” health care professionals volunteering their services through different organizations, and medical students participating in global health electives. Much has been written about global health experiences in resource poor settings, but the literature focuses primarily on the work of health care professionals and medical students. This paper focuses on undergraduate student involvement in short term medical volunteer work in resource (...) poor countries, a practice that has become popular among pre-health professions students. We argue that the participation of undergraduate students in global health experiences raises many of the ethical concerns associated with voluntourism and global health experiences for medical students. Some of these may be exacerbated by or emerge in unique ways when undergraduates volunteer. Guidelines and curricula for medical student engagement in global health experiences have been developed. Guidelines specific to undergraduate involvement in such trips and pre-departure curricula to prepare students should be developed and such training should be required of volunteers. We propose a framework for such guidelines and curricula, argue that universities should be the primary point of delivery even when universities are not organizing the trips, and recommend that curricula should be developed in light of additional data. (shrink)

In the development of a rights-based approach to global health governance, international organizations have looked to human rights under international law as a basis for public health. Operationalizing human rights law through global health policy, the World Health Organization has faced obstacles in efforts to mainstream human rights across the WHO Secretariat. Without centralized human rights leadership in an increasingly fragmented global health policy landscape, regional health offices have sought to advance human rights in health governance and support states in (...) realizing a rights-based approach to health. Examining the efforts of the Pan American Health Organization, this article explores the evolution of human rights in PAHO policy, assesses the mainstreaming of human rights in the Pan American Sanitary Bureau, and analyzes the future of the rights-based approach through regional health governance. (shrink)

What the Doctor Didn’t Say, by Jerry Menikoff and Edward P. Richards, is a courageous and well-written volume that examines some of the fundamental debates pertaining to the ethics of clinical research. The volume deserves a careful reading by anyone with a potential role in clinical research: clinicians who might serve as investigators or refer patients to clinical trials; research staff; Institutional Review Board (IRB) members and administrators; sponsors who design clinical trials; and the book’s intended audience, namely, potential research (...) participants and their families. A cursory reading of this volume might lead one to think that Menikoff and Richards have declared war on clinical research. They have not. Instead, they offer an in-depth study of the conduct and oversight of clinical research through the lens of law and ethics. They shed light on old issues and initiate discussion of new questions, challenging readers to think critically about the relationship between medical ethics, research ethics, the law, and the conduct of clinical research. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Editors’ NoteJames M. DuBois, Ana S. Iltis, and Heidi A. WalshFrom childhood, David Slakter had undergone tests and invasive procedures to monitor his nephritis. It was not a surprise when in 2015, doctors told him he needed a kidney transplant. The wife of a childhood friend was a close match and gave him one of her kidneys. Before his transplant, aerobic exercise was difficult; a few months after transplant, (...) Slakter could ride his bike, hike, and work out with a personal trainer. He no longer had to weigh food or gauge his potassium consumption, a concern for people with kidney failure. For Slakter, “life post-transplant has been a significant improvement.”Individuals or family members of those who have received an organ transplant from a living or deceased donor share their stories in this issue of Narrative Inquiry in Bioethics. The symposium is titled “Receiving the Gift of Life: Stories from Organ Transplant Recipients.” Organ transplantation can extend an individual’s life by decades. It can also greatly improve an individual’s quality of life, as was Slakter’s experience. At the same time, organ transplantation is expensive and stressful. Recipients can experience complications, including organ rejection, and there are few appealing alternatives.After her heart transplant, author Leilani R. Graham required four open-heart surgeries, ECMO, and an intra-aortic balloon pump. She experienced delirium, necrotizing pneumonia, and severe muscular atrophy that required her to re-learn how to walk. She struggled with weight gain, explosive mood swings, hair loss, and was terrified that her body would reject the new heart. For Graham, “[Transplant] was not the miracle [she] was hoping for.” Graham says she felt unprepared for and inadequately informed about what to expect after her transplant, which left her “battered, beaten, and bruised” with a 12-inch line from neck to navel and “bullet holes” up and down her torso from the chest tubes. When reflecting on her experience post-transplant, Graham says, “It wasn’t the physical trauma that hurt the most. It was that no one seemed surprised [by the aftereffects of transplant].” Seemingly no one, that is except Graham, who calls on transplant providers to “prioritize empathy.”The symposium editors are Jason T. Eberl and Tristan McIntosh. Three commentary articles, written by Macey Leigh Levan, Heather Lannon, and Vidya A. Fleetwood, Roslyn B. Mannon & Krista L. Lentine, offer important insights into the authors’ stories. The editors thank Mid-America Transplant, the UCSF Lung Transplant Program, Donor Connect, William L. Freeman, MD, MPH, MJIL, CIP, Janet Monk, and the individuals who gave anonymous donations to support the publication of this issue, an open-access VOICES edition of the symposium, and accompanying teaching guides.The research article in this issue, “‘A Shell of My Former Self’: Using Figurative Language to Promote Communication about Patient Suffering,” was written by Tyler Tate, Elizabeth Stein, and Robert A. Pearlman. The relief of suffering is a primary goal of medicine. However, the authors note that clinicians often miss or ignore suffering because they focus on the causes rather than the experience of suffering, or the subjective nature of suffering makes it difficult to discuss. The authors believe that “the key to communicating about suffering lies in finding [End Page vii] the right kind of words to describe the experience” and say that figurative language offers a promising approach. In their research, the authors performed qualitative analysis on 52 works of literature and identified 254 excerpts of figurative language with themes of non-physical or psychological suffering. The authors found 13 salient themes: brokenness, diminishment, disorientation, drowning, emptiness, imprisonment, battle, darkness, isolation, invisibility, lifelessness, punishment, and torture. The authors reiterate that developing a shared language of suffering could foster a therapeutic patient-clinician relationship and improve clinicians’ ability to recognize and address a patient’s experience of suffering.María Susana Ciruzzi wrote the first of two case studies included in this issue. “The Sword of King Solomon” addresses a tragic and difficult subject—how to navigate the situation posed by conjoined twins when “any decision will produce damage and suffering.” The case involves two infant male patients born at 37 weeks gestation as omphalo-ischiopagus conjoined twins... (shrink)